Can the MRC PACE Trial be justified: Margaret Williams 17.12.09

A new article from Margaret Williams:

Shortlink:  http://wp.me/p5foE-2xK

Open as Word document:  Can the MRC PACE Trial be justified Williams 17.12.09

Also available at:  http://www.meactionuk.org.uk/Can-the-MRC-PACE-Trial-be-justified.htm

Can the MRC PACE Trial be justified

by Margaret Williams

17 December 2009

In March 2003 the House of Commons Select Committee on Science and Technology produced its Report “The Work of The Medical Research Council” (HC 132) in which MPs issued a damning judgment on the MRC, lambasting it for wasting funds and for introducing misguided strategies for its research. The Select Committee had received seven representations about the MRC’s refusal to heed the biomedical evidence about ME/CFS. MPs found evidence of poor planning and of focusing on “politically-driven” projects that have diverted money away from top-quality proposals. The unprecedented attack was the result of a detailed probe into the workings of the MRC. In particular, MPs questioned why the MRC was content to support policies and projects that are likely to perpetuate such criticism.

Given that biomedical research, including gene research (which has shown that in people with ME/CFS, there are more gene abnormalities present than are found in cancer sufferers) has demonstrated that the psychiatrists who hold such sway at the MRC are comprehensively wrong about ME/CFS, nowhere could such criticism be more apposite than in relation to the PACE Trial.

Patients with ME/CFS and their families are in despair, because no-one in authority in the UK seems to be listening: as Mike O’Brien MP, Minister of State for Health, made plain at the APPGME meeting on 2nd December 2009, Ministers can no longer tell agencies of State what to do. This apparently means that, no matter what conclusions are arrived at or what recommendations are made or what evidence is put before a Minister, the Minister concerned can deny having any power to implement change. The Minister himself is reported to have said that he could not require the MRC to undertake research in any specific field, nor could he require Primary Care Trusts to follow Ministerial command. As far as ME/CFS is concerned, it seems that there is nothing the Government can – or will – do about the current situation.

It is apparent that the Government feels no duty of care towards those whose life has been devastated by ME/CFS, a situation that is borne out by Professor Stephen Holgate’s confirmation at the Royal Society of Medicine Meeting on 11th July 2009 (Medicine and me; hearing the patients’ voice) that the Government will not permit integrated research into ME/CFS.

This can only mean that the influence of the Wessely School over the lives of people with ME/CFS will continue and that their tactics of denial will remain unchallenged, no matter what the calibre of the biomedical evidence showing them to be wrong. As people recently drily commented on an ME group, those tactics include:

“load up your committees with your biased friends and pretend they are offering a fresh look; give really negative scorings to biomedical applications; try to stop biomedical papers getting published in the better known journals; make sure to keep on publishing psychiatric rubbish to bias the general medical population and scientific community against any other explanation, and give the impression that CBT/GET is all that is needed i.e. no need to waste all that money on silly biomedical projects” (LocalME@yahoogroups.com 6th December 2009) and

“ensure you use the sketchiest diagnostic criteria you can get away with; wherever possible, avoid seeing / talking to patients at all; never discuss / involve the severely affected; avoid using objective outcome measures; rotate the name of lead authors on papers and ensure you include plenty of reference papers from your psychosocial mates….” (LocalME@yahoogroups.com 7th December 2009).

As others have noted, the strategy is (1) to ignore ME; (2) to ensure that CFS is seen as a problem of false perception, then (3) to reclassify “CFS/ME” as a somatoform disorder (Co-Cure NOT:ACT: 12th January 2008), which is far removed from the reality of ME/CFS, the CNS dysfunctions of which are described by Dr Byron Hyde as being caused by “widespread, measurable, diffuse micro-vasculitis affecting normal cell operation and maintenance….The evidence would suggest that ME is caused primarily by a diverse group of viral infections that have neurotropic characteristics and that appear to exert their influence primarily on the CNS arterial bed” (ibid).

Patients and their families, many clinicians and researchers are well aware of such strategies and tactics but – so powerfully has the Wessely School myth about ME/CFS been promulgated – have been unable to halt them.

As Dr Jacob Teitelbaum reported, the XMRV virus study clearly documents that (ME)CFS is validated within the mainstream medical community as a real, physical and devastating illness, “again proving that those who abuse patients by implying that the disease is all in their mind are being cruel and unscientific…Though the economics may cause a few insurance companies to continue to unethically deny the science, so they can avoid paying for the health care and disability costs they are responsible for, this research should speed up understanding of the illness. Meanwhile, for those with the illness, their families and their physicians, it is now clear that this is a real and devastating illness” (Co-Cure RES: 4th December 2009).

There can be no doubt that, for patients with ME/CFS as distinct from those suffering from chronic “fatigue”, neither CBT nor GET is effective, otherwise everyone would by now be cured.

Report of Meeting of the All Party Parliamentary Group on ME by John Sayer

Shortlink: http://wp.me/p5foE-2wI

Update: A second report, in the form of a YouTube video, has also been published:

Dr Charles Shepherd’s unofficial summary of the 2 December APPG on ME meeting, published on behalf of the ME Association on 4 December, can be read here:

Summary of meeting of APPG on ME 2 December 2009: http://wp.me/p5foE-2sj

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Video Report on the UK Parliament All Party Group, APPG, on ME meeting of the 2nd of December

The APPG on ME met on the second of December this year to conclude the Inquiry the APPG has been conducting into publicly funded UK NHS health services for people with ME. APPGs are low level parliamentary committees made up of members of the elected House of Commons and the unelected second or upper tier of Parliament.

However, APPGs are not part of the structure of the UK Government and neither are they part of the official parliamentary committee structure for the scrutiny of government legislation or government departments like the Health Select Committee which scrutinises the Secretary of State for Health and their junior ministerial colleges in order to have parliamentary oversight of the Department of Health.

The main purpose of the APPG on ME’s Inquiry was to interest the Health Select Committee in setting up a similar and more powerful and well resourced Inquiry into NHS services for people with ME. This appears to be a very unlikely outcome given the way the APPG’s Inquiry was conducted and the way in which the Inquiry was concluded.

The meeting of the APPG held on 2/12/09 has proved to be a particularly controversial one and there have been a number of rumours running around the Internet about what took place. The first of a series of three videos gives a factual account of what took place at this meeting with comment and analysis. The remaining videos set out the background to the Inquiry from its inception through to the way in which the Inquiry was carried out.

I would therefore recommend that anyone who has seen the various accounts of the proceedings of the 2nd of December meeting on the Internet might like to watch these videos in order to place the events of the 2nd of December meeting in wider context of the APPG Inquiry as a whole, and then judge matters accordingly.

The report on the meeting of the 2nd of December APPG meeting can be viewed on the You Tube Channel action4change4me at :-

http://www.youtube.com/watch?v=YyFp_sTNj08

The background to the APPG Inquiry can be found from a previous video report of the 1st of April 2009 APPG meeting which deals with the setting up and launching of the Inquiry which can be viewed through the You Tube Channel action4change4me at :-

http://www.youtube.com/watch?v=ndqP-pSrj6I

There is another video report on the APPG on ME meeting of the 8th of October 2008 at which the APPG first decides to initiate the Inquiry, which can be viewed on the You Tube Channel GBC One here :-

http://www.youtube.com/watch?v=vPPClZDko8c

Ciaran Farrell

15 December 2009

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Meeting of the All Party Parliamentary Group on M.E.
12 December 2009

Report by John Sayer (Chair M.E. Support-Norfolk)

This was the first APPGME meeting I’d ever been able to attend (thanks to Dan, of M.E. Support-Norfolk, driving us down to London) and I’ve now seen for myself how the APPGME operates.

I was not impressed.

Worst of all was the appallingly unprofessional and unhelpful behaviour of the Chairman, Des Turner MP** and the Secretary, the Countess of Mar, right at the start of the meeting: Paul Davis (RiME) had tried to make a point to Turner as he started his opening remarks, and instead of the latter asking him to wait till he’d finished so he could take comments and/or questions (which would be the professional, polite and normal thing for someone chairing a meeting to do), he shouted at Davis for interrupting – like an angry teacher in a classroom – and continued remonstrating, subsequently also turning on attendee Ciaran Farrell, when he politely tried to calm the situation.

There must have been some background history of tension here, since there was no justification for Turner’s over-the-top outburst, and in the middle of his continuing rant Mar suddenly demanded that Davis and Farrell be ejected, otherwise she herself would leave. But without waiting for any response, and with attendees looking stunned and/or bemused, she grabbed her things, said she was leaving anyway, and promptly walked out.

Turner continued with his diatribe, and with belligerent looks and gestures, widened the target of his rebukes to apparently include the whole row of us who were seated together, at one point jabbing a finger in our direction and threatening to have anyone who interrupted him escorted out of the building by the police!

It was an apparent case of Turner, having lost his temper, further getting carried away with his emotions, because he then threatened to leave the meeting as well, actually getting to his feet and gathering up his papers. (Other attendees seated opposite us implored him to stay, which he did.)

This entire episode was completely ridiculous, and I suspect it was a case of Turner and Mar having anticipated trouble for some reason and behaving accordingly, but with no actual cause to do so. It was farcical.

As for the rest of the meeting, we ‘peasants’ were generally treated with what I can only describe as disdain. I would have been open-minded about anyone else’s account if I hadn’t experienced it for myself. It was a disgrace, in my view, and as far as I’m concerned we can do without ‘champions’ like these. What the motivation is for being involved, I don’t know, but I suspect it might have something to do with seeking to maintain control of ‘the movement’ through whatever channels available, the APPGME being just one of them.

My suspicions that this episode was artificially engineered were given strength by the subsequent address by Mike O’Brien MP**, Minister of State for Health Services, who – describing M.E. as “a set of conditions” (!) – appeared to labour the point that one of the obstacles to progress was the lack of unity and agreement amongst patient groups. (Where have we heard that one before?) How coincidental and convenient that the meeting began so ‘controversially’ and demonstrated what a bunch of ungrateful, bolshy irritants we M.E. patients are!

The overwhelming impression I got from this meeting (and not in isolation, as I’ve been following accounts of previous APPGMEs) is that the whole enterprise is becoming a sham. Having dragged myself down to London (at a cost that doesn’t need explaining here), I was well and truly hacked off at the Secretary walking out before the meeting had even got going, being treated like a pariah by a Chairman threatening to end the meeting and having chronically ill patients removed by the police, and being patronised by a Minister whose address was the epitome of political spin. O’Brien seemed to believe that having M.E. meant some days feeling poorly and some days feeling well – well enough to have a part-time job, in fact. So we know where he’s coming from: apparently the same place as Yvette Cooper MP** (guest speaker at the previous APPGME meeting), Secretary of State for Work and Pensions, who ‘had M.E’ some years ago but is now ‘fully recovered’…

In the meantime, Dr Charles Shepherd of the Myalgic Encephalopathy Association (MEA), has put his own account of the meeting on the MEA web site here

[extract]:

“Unfortunately, the meeting got off to an extremely regrettable start – all due to a very small section of the audience making repeated and sometimes very aggressive interruptions about various administrative matters. As a result of this gross discourtesy to the Minister, the time available for the ministerial response was being steadily eroded. Despite several polite requests from the Chairman, the interruptions continued. As a result, the Countess of Mar terminated her involvement with the meeting. The Chairman then stated that he would either terminate the meeting or arrange for those involved to be removed from the committee room by the House of Commons police if their interruptions continued. Shortly after, those involved calmed down and we managed to start dealing with the real business of the APPG report.

“On a personal note I am very much in favour of public attendance/contribution at these meetings. However, it needs to be said that if people with ME/CFS want to alienate parliamentary opinion about this illness, and not even have an APPG to put forward their case to ministers etc, then behaving in an aggressive and unpleasant manner is a very good method for achieving this aim. We already have a situation whereby some MPs are unwilling or reluctant to attend APPG meetings – all because of the obsessive and often unpleasant interruptions about administrative matters. And it could well be that after the Election, when the APPG will have to be reformed, it will be very difficult to find enough parliamentarians who are willing to take on an active APPG role. We just cannot afford to risk losing the support of distinguished parliamentarians like the Countess of Mar. It also needs to be said that the vast majority of people with ME/CFS who were present on Wednesday, or were being represented, had come to hear about the report, listen to the Minister, and then ask difficult questions about NHS services – they did not want to take up valuable time listening to complaints about the minutes and APPG administration. This could (and should) have waited till after the Minister had left.”

I’m afraid to say that this version of events at the start of the meeting is so inaccurate as to be justifiably called false. It is not just a distortion of the facts, it is blatantly wrong and I’m now ready to believe that this shameful episode really was deliberately engineered, in order to cast certain individuals – or ‘the M.E. community’ in general – in as bad a light as possible, presumably for the benefit of the Minister of State for Health Services and/or the TV production crew apparently, according to Shepherd’s notes, in attendance.

The “audience” as Shepherd calls us here, did not behave “in an aggressive and unpleasant manner”. Yes, technically speaking and in line with protocol, Davis should perhaps have waited for Turner to finish speaking before seeking to make a point to the Chair, but this was hardly the Crime of the Century and was certainly not a “very aggressive interruption”, as Shepherd would have it.

Neither did Turner make “several polite requests”; he was rude and abusive, to the point of verbal assault. That’s the simple truth. He behaved like an angry, out of control teacher trying to silence a pupil. It was a disgrace and an embarrassment and completely uncalled for. The ‘continued interruptions’ Shepherd refers to were actually contributions from those trying to calm Turner down – including, as I recall, Sir Peter Spencer, CEO of Action for ME!

It is not correct to say, “As a result [of the 'contuinued interruptions'], the Countess of Mar terminated her involvement with the meeting”. She delivered an ultimatum and then left before anyone could even consider it. There was no need for “those involved” to “calm down”, because people were calm – so calmly spoken in contrast to Turner’s agitated outpourings, in fact, that it was a strain to hear what they were trying to say.

As if to reinforce O’Brien’s assertion that it is partly the fault of ‘the M.E community’ that progress is not being made, Shepherd writes, “…it needs to be said that if people with ME/CFS want to alienate parliamentary opinion about this illness, and not even have an APPG to put forward their case to ministers etc, then behaving in an aggressive and unpleasant manner is a very good method for achieving this aim. We already have a situation whereby some MPs are unwilling or reluctant to attend APPG meetings – all because of the obsessive and often unpleasant interruptions about administrative matters.”

No mention here of the APPGME Chairman “behaving in an aggressive and unpleasant manner” (which he did). No, let’s blame M.E. sufferers themselves for the lack of progress. This excuse just won’t wash any more, and in my own opinion, anyone – MP or otherwise – who is reluctant to get involved in our cause because of the justifiable frustration generally of M.E. patients who have had to suffer denigration, neglect and abuse for decade on decade, is quite simply of no use to us in the first place and we could well do without them.

(It is a ruse, in my view, to attempt to lay some of the blame for the lack of progress in our cause at the feet of patients attending these APPGME meetings and to thereby prejudice the understanding of those not privy to the facts. I have now reached the point, after 17 years, where I seriously believe that too many of our ’supporters’ are not there to help us at all, but to make sure we don’t actually get any help.)

And if they can’t cope with the issues surrounding ill and vulnerable people, how do MPs manage to deal with their constituents, and voters in general? (With the compensation of a life sweetened by the payment of their moat repairs, damp-proofing, fancy dress wigs and porn movies, perhaps?)

This meeting “got off to an extremely regrettable start” , alright – but not because of the M.E. patients present; it was thanks to the Chairman’s and Secretary’s inability to control themselves. But there’s no need to take my (or anyone else’s) word for what happened: the meeting was officially audio-recorded, and the transcript should eventually be made available for all to see.

Little wonder Shepherd refers in his account to “the audience” at this meeting. As far as I could make out, we were an audience, alright – watching a contrived performance.

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**Footnote

(From the Daily Telegraph supplement “The Complete Expenses Files”; italicised comments are my own):

Des Turner (salary £64,766) Des Turner is a former teacher [aha!] with a PhD in biochemistry. He claimed mortgage interest payments of up to £450 per month on a flat in London and also claimed up to £400 each month on food… [Note - the MPs' expenses allowance for food alone is equivalent to Incapacity Benefit payments for those unable to work!]

Mike O’Brien (salary £104,050) Claimed £825 for a Sony television in 2006-7, breaching £750 limit, and repaid money following year so he could move it to other home. Claimed £30 for a DVD player in March 2008, plus £250 a month mortgage interest on his designated second home in Nuneaton and £200 a month for food and more for other bills.

Yvette Cooper (salary £141,866) …At one point, Miss Cooper, the new Work and Pensions Secretary, and Mr Balls [husband], the Children’s Secretary, had their expenses docked, having each submitted two monthly claims for mortgage interest for nearly twice the cost of their actual payments. The couple denied flipping after switching their second home designation three times, saying that they had not sought to maximise their expenses and that, unlike some colleagues, they had paid capital gains tax on selling their home…In total, the couple claimed £24,400 between them on their second home allowance last year…

[And it's the sick and disabled these people are supposed to help who are branded "benefits scroungers"?]

Statements of Concern about CBT/GET provided for the High Court Judicial Review of February 2009 M Williams

Shortlink: http://wp.me/p5foE-2vO

Statements of Concern about CBT/GET provided for the High Court Judicial Review of February 2009

Open PDF MS Word document: Statements of Concern for High Court

http://www.meactionuk.org.uk/Statements-of-Concern-for-High-Court.htm

http://www.meactionuk.org.uk/Statements-of-Concern-for-High-Court.pdf

Margaret Williams

12 December 2009

This material has been remove by the editor of ME agenda since it contains references to ongoing formal complaints lodged by the Claimants “against their own former solicitors and barrister; initially, both Leigh Day & Co and the Head of Chambers at One Crown Office Row” and a complaint to the Bar Council Standards Board.

XMRV Retrovirus: Round up 25: WPI on DeFreitas, Hansard, MEA, AfME, Johnson

XMRV Retrovirus: Round up 25: WPI DeFreitas statement, Hansard, MEA, Action for M.E., Hillary Johnson blog

WordPress Shortlink: http://wp.me/p5foE-2tq

XMRV Retrovirus: Round up 24: Testing and news of research studies click  here: http://wp.me/p5foE-2sX

Click here for all previous XMRV Round ups and XMRV related postings in reverse date order

Whittemore Peterson Institute on Facebook

Statement posted by Whittemore Peterson Institute on 25 November under their “Notes” tab

http://tinyurl.com/WPIFacebook8  

Fact #8

Wednesday, November 25, 2009 at 8:44pm

XMRV is Not the retrovirus identified by De Freitas et al.

the publication and patent submitted by De Freitas et all clear describe the molecular characteristics of a retrovirus that is not a gamma (type C) retrovirus. The patent submitted for the retroviruses states

“Chronic Fatigue Immunodeficiency Syndrome associated virus, hereafter referred to by the name CAV may be morphologically characterized as a retrovirus, particularly a non-C retrovirus which is capable of infecting humans. Electron microscopy of viral particles formed in infected human cell cultures suggests that CAV is a non-C type retrovirus because of its diameter, morphology, formation and location of intracellular virions. The Electon micrographs of XMRV shown in Lombardi et al clearly depict a budding type C retrovirus of 90-100microns The DeFritas patent goes on to say “More specifically, CAV-infected cells could be characterized by electron-dense circular virions, some with electron-luscent cores and others with electron-dense cores, associated with the rough endoplasmic reticulum and inside large abnormally distended mitochondria in the cells. All particles are the same shape and size, 46-50 nm. No extracellular virus is observed. No forms budding from the cytoplasmic membranes are observed.

Thus, CAV-infected cells could also be charcterized by the presence of intracytoplasmic particles”Gamma (type C) retroviruses are 90 1100uM as shown in Lombardi et al and all are shown to consist of electron dense cores and specifically to bud extra-cellularly not intracellularly.

The data describes in the Defreitas patent can be found at:

http://www.ncf-net.org/forum/revelations.html

These data are indisputable that XMRV is NOT the retrovirus described by De Freitas et al.”

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Hansard

http://www.publications.parliament.uk/pa/cm200910/cmhansrd/cm091207/text/91207w0010.htm

7 Dec 2009 : Column 46W

Biomedical Research

Paul Rowen: To ask the Minister of State, Department for Business, Innovation and Skills what biomedical research into myalgic encephalomyelitis and xenotropic murine leukaemia virus-related virus is being undertaken. [304330]

Mr. Lammy: The Medical Research Council (MRC) is one of the main agencies through which the Government support medical and clinical research. The MRC is an independent body which receives its grant in aid from the Department for Business, Innovation and Skills.

In 2008-09 the MRC’s total expenditure for research relating to Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) amounted to £728,000. This supported four projects including a £164,000 research programme led by Dr. C Clark at Queen Mary College, London on the general and specific risk markers and preventive factors for chronic fatigue and irritable bowel syndromes. CFS/ME continues to be a strategic priority area for funding and the MRC remains committed to supporting scientific research into all aspects of CFS/ME including evaluations of treatments and studies into the biological basis of the condition.

The MRC recently held a CFS/ME research workshop where the recent xenotropic murine leukaemia virus-related virus (XMRV) findings were among the items discussed. A note of the discussions will be published on the MRC website in due course.

The MRC’s National Institute for Medical Research are leading a programme on infection and replication of retroviruses (including XMRV). One study within the programme is looking at how XMRV reproduces in the cell, its interaction with host cell factors and how it subverts the host immune systems.

© Lord Hansard

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ME Association

Response from Dr Charles Shepherd to concerns from member of the ME community:

Neil [Riley, Chair MEA Board of Trustees] has asked if I could respond to your email to the MEA about patient selection in XMRV research that might be funded by the RRF.

This is a complex issue and I’ve tried to explain the situation in rather more detail in version 4 of the MEA position statement, which is now up on the MEA website: www.meassociation.org.uk

Very simply, we are looking at a two stage research situation that will hopefully clarify the situation regarding XMRV prevalence in the ME/CFS population at some point in 2010, and (depending on the results) then move on to looking at viral pathogenicity in more detail (ie is this a disease causing virus?) and antiviral treatment. Incidentally, the results of a new research study looking at the use of AZT as a possible treatment for XMRV will be up on the MEA website later today: www.meassociation.org.uk .

As you know, the WPI study used patients who met both Fukuda research criteria and Canadian clinical criteria – partly because scientific journals don’t accept the validity of the CCC as a valid research tool..

Not surprisingly, the first stage of the attempt to replicate these results has resulted in various international groups almost entering a race to see who could replicate or refute the WPI results first. And this has meant they have gone for an easy and immediate source of patient material >> stored blood samples. I am not aware of any stored blood samples here in the UK that are from patients who meet Fukuda plus Canadian criteria and I doubt if there are any. So there was no point in the MEA insisting that research funding in stage one could only be used in studies involving Canadian criteria patients, or CC + Fukuda.. I therefore suggested that these ‘first off the mark’ studies should only involve Fukuda criteria patients as here in the UK there is a real worry that retrovirologists, who have very little general knowledge of ME/CFS, might be using samples from patients from NHS sources that meet either Oxford research or even NICE clinical criteria – the latter being used by the NHS clinics. It would have been helpful if the paper itself had carefuly specified the selection criteria because I know that there are researchers taking this forward on the basis that CFS in the paper = CFS Fukuda.

As far as the second stage is concerned, we would certainly be looking at funding a study that would use Fukuda plus Canadian criteria but there are still going to be major problems and we cannot be dogmatic here. This is because the NHS services do not use Canadian criteria in their clinical assessments and most of us who work in the UK private sector don’t have sufficient numbers of new patients coming through to quickly build up a decent number (ie 100 cases) meeting both criteria, and we don’t tend to be dogmatic about the use of criteria in patients already diagnosed.

And this may be why MERUK has decided to fund a study in Sweden rather than here in the UK. The MEA would prefer to fund UK XMRV studies but we are willing to look at overseas proposals – as has already happened.

As you will have seen I have spent a great deal of time over the past few weeks talking to virtually all the virologists and retrovirologists here in the UK that are interested in taking this work forward, and the MEA is very keen to help in whatever way we can. I hope the researchers are now well aware of the issues surrounding careful patient selection (some of them were definitely not) and not just the science behind XMRV.

I hope you find this helpful.

I would be happy to discuss in more detail if you would like to call me on my home number when convenient.

Regards

Dr Charles Shepherd
Hon Medical Adviser, MEA

(This information may be forwarded if you wish to do so)

ME Association

XMRV and ME/CFS? What do we know so far? And what don’t we know? (version 4)

27  November 2009

Version 4 of the MEA position statement on XMRV clarifies some of the points and queries raised in the previous three summaries. Version 4 also updates the situation on XMRV research in the UK, testing for XMRV, and refers to our correspondence with the Chief Medical Officer regarding blood supplies and blood donation.

This summary is intended to be a balanced account of the current situation. It therefore not only raises questions but is also very cautious when it comes to drawing any firm conclusions about the role of XMRV in ME/CFS as either a diagnostic marker, causative agent, or abnormality that requires active treatment with antiviral medication.

[...]

ROLE OF ME RESEARCH UK (MERUK) and IRISH ME TRUST

MERUK and The Irish ME Trust have just announced that they are providing joint funding for a replication study that will be carried out in Sweden. This work will be carried out by Professor Blomberg, Head of the Research Group of Clinical Virology, University of Uppsala and Professor Gottfries, from the Sahgrenska University Hospital, Molndal. The researchers will retrospectively test previously stored samples from 3 groups of patients (20 Fukuda defined ME/CFS; 20 fibromyalgia; 20 irritable bowel) and 20 controls. In addition, they will prospectively test samples from 120 ME/CFS patients defined by Fukuda 1994 and Canadian 2003 clinical criteria. Results are expected in Spring/Summer 2010. More information on this study can be found on the MERUK website.

http://www.meresearch.org.uk/research/projects/xmrvsweden.html

SELECTING PEOPLE FOR FURTHER RESEARCH STUDIES

There is clearly an immediate need for international agreement and co-operation on the research criteria being used to select well-characterised ME/CFS patients for further research into XMRV. Otherwise, we could end up in spring/summer 2010 with a collection of conflicting results on prevalence because different international research groups have been using different patient selection criteria.

In the present situation, many research groups are reluctant or unwilling to use Canadian criteria. This is because these are essentially clinical criteria and in the eyes of many researchers they have not been validated for use in research studies as stand alone criteria. There is also the problem in that most research groups do not having ready access to stored blood samples from ME/CFS patients that meet Canadian criteria.

So the best way forward may be for everyone to agree to use either Fukuda-defined CFS – which would obviously help to define which sub-groups of patients are XMRV positive under this CFS umbrella – or, if possible, to use patients that meet both Fukuda CFS and Canadian clinical criteria. It is worth noting that a significant proportion of people with Ramsay-described ME will not meet Fukuda criteria for CFS – so they are likely to be excluded from research currently taking place.

We do not believe that it is sensible to extend the entry criteria into research studies by using the 2005 ‘empirical’ definition of CFS for patient selection purposes as this will bring in an even more diverse group of patients who have chronic fatigue. This point has also been made by Dr Nancy Klimas when she addressed the CFSAC meeting in Washington in October.

Provided there is careful selection of ME/CFS patients, healthy controls and disease controls, we may then be able to draw some meaningful conclusions about which people who come under the wide clinical spectrum of CFS clinical presentation have XMRV and which do not.

Besides using stored blood samples, research needs to involve fresh clinical cases, as well as other disease groups (particularly inflammatory conditions with immune activation) and properly matched healthy controls.

Click for full version 4 here

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Action for M.E.  

http://www.afme.org.uk

Professor Tony Pinching, Action for M.E.’s Principal Medical Adviser, sets out his views on XMRV in this article from InterAction 70, published this week:

InterAction 70 Christmas 2009

Page 9

Potential virus breakthrough

We thought all our Christmases had come early in October, when researchers at the Whittemore Peterson Institute in Reno, USA announced that they had identified genetic material (DNA) from a mouse virus – murine leukaemia virus related virus or XMRV- in 68 out of 101 CFS patients (67%) compared to 8 out of 218 (3.7%) of healthy people.

Further blood tests showed that more than 95% of CFS patients have antibodies to XMRV, indicating they had been infected with the virus, which may then have lain dormant in their DNA.

Dr Judy Mikovits, research director, Whittemore Peterson Institute, is testing a further 500 blood samples collated from patients diagnosed with CFS in London.

In our press statement, quoted in part by the BBC, Sir Peter Spencer said:

“It is still early days so we are trying not to get too excited but this news is bound to raise high hopes among a large patient group that has been ignored for far too long.

“If the researchers can go on to prove a definitive cause and effect between this retrovirus and M.E., it will make an enormous difference to 250,000 men, women and children who have M.E. in this country.

“Action for M.E. has long been calling on the UK Government to invest more in research into the causes of this horrible illness. Once we know the cause, researchers can start working on more effective treatments, preventive measures and ultimately a cure for M.E.”

What does this research signify?

Professor Tony Pinching, Action for M.E.’s Principal Medical Adviser says the study needs to be confirmed by independent research and it would be very premature to think about clinical tests or treatments based on these early findings (see below). His caution is echoed in statements by Professor Andrew Lloyd, Director, Centre for Infection and Inflammation Research, University of New South Wales (see www.me-cfs.org.au/node/448 ), NCI director Dr John Niederhuber (www.cfids.org/temp/xmrv-guidelines-nci.asp ) and Dr Charles Shepherd, ME Association www.meassociation.org.uk  (under ‘quick links’ on their home page). Professor Pinching comments:

“A new research report about CFS in a major science journal is obviously reason for some excitement. Many of you will have heard the news reports – some will have been hopeful, others sceptical, and many others unsure what to think. And that’s about the size of it too for the informed observer of the scientific data.

“In essence, a US study has shown apparent evidence of a virus (XMRV) in the blood cells of people with CFS, taken from a repository of samples from ‘well-characterised cohorts of patients.’

“XMRV is related to a class of mouse leukaemia viruses that have not been previously firmly associated with any human disease, although recently seen in some patients with prostate cancer. Although these viruses have been much studied in cancer biology, they can also be contaminants, although circumstantial evidence is against this here.

“67% of CFS patients compared with 4% of controls showed evidence of the DNA of this virus. Other evidence shows that the virus is actively expressed in patient cells, is capable of passing from cell to cell, and generates a detectable immune response in patients.

“The brief report lacks information about patient characteristics, and the comparability of patient and control samples, but the data seem plausible and internally consistent.

“However, much more work is needed to determine what these early findings signify. The first and most crucial test would be independent verification, through studies on large numbers of carefully characterised patients at other sites, preferably on fresh, not stored, samples.

“We also need studies on large numbers of both healthy people and people with other conditions. This is to clarify how specific the association is, and the extent to which XMRV occurs in other chronic immunological or neurological conditions.

“Biologically, there is no obvious mechanism that would link this sort of virus (very different from familiar viruses) to this sort of condition, although various plausible hypotheses could be devised. Most importantly, the virus could as easily be an effect of the illness, as it could be a cause or disease mechanism. An altered state of immune cells – from which the virus was derived – could activate an innocent passenger virus, for example.

“For the usual reasons, very preliminary research results have led to much speculation, inevitably raising hopes of people with CFS/ME. Loose talk of clinical tests and therapies based on these findings may reflect a genuine need for such things, but not any clear justification from the published science to date.

“So my thoughts so far are:

. this is interesting, but it first needs independent and substantive confirmation

. we don’t know whether XMRV is cause, effect, or just a passenger

. it would be very premature to think about clinical tests or treatments based on these early findings

. perhaps the most important thing is that this work will foster more high quality research on the biology of this clinically important but scientifically enigmatic condition.”

Professor Tony Pinching, for Action for M.E.  InterAction 70 Christmas 2009

—————-

Commentary on research

Dr. Timothy Luckett’s blog

http://cfidsresearch.blogspot.com/

—————-

Hillary Johnson (journalist and author of Osler’s Web)

13 November 2009

“I’ve written a new blog post about the recent CFSAC meeting in Washington, D.C. and the new scientific terrain created by the discovery of XMRV.”

http://www.oslersweb.com/blog.htm?post=646449

5 December 2009

“When did it stop being about you and become all about them?”

http://www.oslersweb.com/blog.htm?post=648635

—————-

Websites, communities, commentary and quality forums

Dan Moricoli’s ME-CFS Community

http://cfsknowledgecenter.ning.com/profiles/blog/list

—————-

Cort Johnson’s Phoenix Rising website: http://aboutmecfs.org/Rsrcs/XMRVResources.aspx

Cort Johnson’s Blog and comments: http://aboutmecfs.org/blog/

Cort Johnson’s Forums: http://forums.aboutmecfs.org/

Link Back

Whittemore Peterson Institute on Facebook

For initial Whittemore Peterson Press Release, NIH (National Institutes of Health) News Release, go here: http://wp.me/p5foE-272

For PDF reprint of Science paper go here:

http://www.sciencemag.org/cgi/rapidpdf/1179052?ijkey=m3wzKT4yJqEyk&keytype=ref&siteid=sci

Click here for all previous XMRV Round ups and postings in reverse date order: http://meagenda.wordpress.com/category/xmrv/

ME Association: Summary of meeting of APPG on ME 2 December 2009

Ed: Note that Dr Charles Shepherd has used this unofficial summary of the APPG on ME meeting to advance his personal opinion on what he considers to have been unacceptable behaviour by a member of the public.

It has not gone unnoticed or unremarked upon that at the previous meeting of the APPG, in October, the Chair of the Sussex and Kent ME and CFS Society, had addressed another member of the public in a manner which has been reported by several of those in attendance at that meeting as having been grossly inappropriate.

When Dr Shepherd had written up his summary of the October meeting, that section of the procedings was reported only as “…a very lively discussion on the current state of NHS services for people with ME/CFS.”

I do not consider that Dr Shepherd should be using summaries published in the name of the ME Association to further his personal views and opinions on matters that are the purview of the Chair, nor should he presume to speak on behalf of the “vast majority of people with ME/CFS who were present on Wednesday, or were being represented”.

As joint secretariat, Action for M.E. and the ME Association undertake the circulation of minutes and agendas for these meetings but they are not members of the APPG on ME and their status as organisations and that of their representatives in relation to the group is no different to that of any other organisation that sends a representative to attend these meetings.

Shortlink: http://wp.me/p5foE-2sj

ME Association: Summary of meeting of APPG on ME 2 December 2009

Friday, 04 December 2009 11:09

This is a fairly detailed summary of the meeting of the All Party Parliamentary Group Group (APPG) on ME held in Committee Room 11 at the House of Commons on Wednesday 2 December, 2009.

The meeting lasted from approximately 3.15pm till 4.45pm.

Please note that this is a personal summary and not the official APPG Minutes. These will appear later.

ATTENDANCE

Parliamentary:

Dr Desmond Turner MP – Chair
Countess of Mar – Secretary
Andrew Stunell MP – Vice Chair

Koyes Ahmed – Office of Dr Turner MP

Rt Hon Mike O’Brien – Minister of State for Health Services at DoH
Accompanied by three DoH officials

Secretariat:

Tristana Rodriguez (AfME)
Sir Peter Spencer (AfME)
Dr Charles Shepherd (MEA)

ME/CFS charities and organisations:

Jill Cooper – Warwickshire Network for ME
Paul Davis – RiME
Doris Jones – 25% Group
Bill and Janice Kent – ReMEmber
John Sayer – ME Support Norfolk
Janet Taylor – Independent Kirklees ME Support Group
Mary Jane Willows – AYME

Others:

Several people with ME/CFS, and carers, attending in a personal capacity
Dr William Weir – infectious disease specialist
Television production company that is making a documentary about ME/CFS

NB: This is not a complete list of everyone who attended because I did not have the opportunity to check on the attendance book at the end of the meeting. So apologies to anyone who has not been included. If anyone does want their name added please let me know.

BACKGROUND: THE MEETING

The main purpose of this meeting was to discuss the APPG Report into NHS Service Provision for people with ME/CFS.

The Rt Hon Mike O’Brien, Minister of State for Health Services at the Department of Health, arrived shortly before the start. He was there for 45 minutes to listen to the key findings, give a short presentation, and then answer questions before leaving promptly (as ministers do!) at 4pm. The Minister had received a copy of the interim report prior to the meeting – so he was already aware of the contents.

Unfortunately, the meeting got off to an extremely regrettable start – all due to a very small section of the audience making repeated and sometimes very aggressive interruptions about various administrative matters. As a result of this gross discourtesy to the Minister, the time available for the ministerial response was being steadily eroded. Despite several polite requests from the Chairman, the interruptions continued. As a result, the Countess of Mar terminated her involvement with the meeting. The Chairman then stated that he would either terminate the meeting or arrange for those involved to be removed from the committee room by the House of Commons police if their interruptions continued. Shortly after, those involved calmed down and we managed to start dealing with the real business of the APPG report.

On a personal note I am very much in favour of public attendance/contribution at these meetings. However, it needs to be said that if people with ME/CFS want to alienate parliamentary opinion about this illness, and not even have an APPG to put forward their case to ministers etc, then behaving in an aggressive and unpleasant manner is a very good method for achieving this aim. We already have a situation whereby some MPs are unwilling or reluctant to attend APPG meetings – all because of the obsessive and often unpleasant interruptions about administrative matters. And it could well be that after the Election, when the APPG will have to be reformed, it will be very difficult to find enough parliamentarians who are willing to take on an active APPG role. We just cannot afford to risk losing the support of distinguished parliamentarians like the Countess of Mar. It also needs to be said that the vast majority of people with ME/CFS who were present on Wednesday, or were being represented, had come to hear about the report, listen to the Minister, and then ask difficult questions about NHS services – they did not want to take up valuable time listening to complaints about the minutes and APPG administration. This could (and should) have waited till after the Minister had left.

APPG REPORT INTO NHS SERVICE PROVISION FOR PEOPLE WITH ME/CFS

NB: A copy of the interim report, along with the APPG press release, can be accessed by clicking here.

Des Turner started by explaining that the APPG had originally intended to publish the final report at this meeting. However, it was felt that an interim report was more appropriate at this stage. This was mainly due to the practical difficulties faced by a group with very limited resources – both staff and financial – who were bringing together and summarising the large amount of evidence that had been received.

Des Turner apologised for the fact that people had not had adequate time to read the interim report. He explained that the APPG, which has had only limited administrative support, had been very pushed for time when it came to analysing the evidence and arriving at recommendations, with the final version only being printed at the end of last week.

Des Turner carefully went through the 11 key recommendations contained in the interim report and briefly explained why they had been made in relation to the evidence sent into the Inquiry..

Mike O’Brien then made a ten minute statement relating to the recommendations contained in the interim report. Key points to emerge from the ministerial statement include:

• The 2002 Chief Medical Officer’s report had been a major turning point for people with ME/CFS – but the system (ie the NHS and DoH) had not responded adequately and put into place the various clinical, administrative and funding pathways that had been recommended by the CMO report.

• The APPG report was another milestone.

• The recommendations set out in the APPG interim report were sound and blatantly obvious.

• There was a real problem with ME/CFS when it came to ensuring that care pathways meet individual needs – which obviously vary considerably in relation to symptoms, severity etc in ME/CFS.

• The system responds to simple straightforward needs – not to complex conditions like ME/CFS.

• There were big differences in opinion amongst patients and clinicians when it came to management of ME/CFS, especially in relation to CBT and GET. This made life difficult for service providers.

• The problem is at a local level because ministers no longer rule from Whitehall and tell primary care trusts (PCTs) how to spend their money.

• The CMO report should have triggered PCTs to take action but some have not responded.

• Some PCTs are providing a good service; some a mediocre service. Others are not responding to the needs of people with ME/CFS at all – partly as a result of uncertainty and/or scepticism about the illness by their medical advisers. This type of inaction was not acceptable.

• ME support groups need to work together and pursue the case for new or better services at a local level.

• The need for accurate information on numbers was acknowledged (Recommendation 1). The challenge was how best to obtain this complex epidemiological information.

• There was a case for creating a National Service Framework for ME/CFS (Recommendation 2)but more hard evidence about the illness was needed.

• Acknowledgement of the need for more biomedical research (Recommendation 9) – he will write to the Medical Research Council (MRC) and ask for more work to be done.

• Acknowledgement of the problems faced in relation to DWP benefits and recommendation 10 in the report. The DWP did not deal very well with ME/CFS.

Before leaving at just after 4pm the Minister took a handful of questions from the floor. Among the topics covered in this question and answer session:

• From Janet Taylor: How the local ME/CFS Group in Kirklees, Yorkshire had used the existing evidence to persuade their service provider that ME/CFS should be regarded as a neurological illness

• From Charles Shepherd – What could people do if a PCT refused to provide a service? CS pointed out that there would be a major scandal if a PCT decided that it would not provide a service for people with cancer and the DoH would not allow this to happen. The Minister again refused to agree that the DoH should be more proactive in putting pressure on PCTs that refuse to set up a service.

• From Janice Kent – The Lightning Process. Janice Kent referred to the situation in Sussex. The Minister was obviously well informed about the Lightning Process and the controversy that surrounds it. It appeared that he was sympathetic to research into the use of the Lightning Process.

• From Peter Spencer – the Medical Research Council Peter Spencer pointed out that lack of services are linked to lack of research. The Minister acknowledged this was a valid point and he would therefore write to the MRC to highlight the need for more biomedical research.

Overall, Mike O’Brien listened carefully to what was being said and gave the impression that he understood (and had sympathy with) the anger about research, services and benefits. However, many of his answers were political rather than entering the territory of real practical solutions. think most people were just not convinced by the way in which the blame for lack of services is constantly passed to the PCTs with the explanation that the DoH cannot tell them what to do or how to spend government health money.

MEA STATEMENT ON THE INTERIM REPORT

BACKGROUND

The All Party Parliamentary Group (APPG) on ME has published an interim report on its Inquiry into NHS Services in England for people with ME/CFS.

The Inquiry has been taking placing during the course of this year.

The Inquiry was initiated as a result of widespread concerns about the way in which this illness is diagnosed and managed in both primary and secondary care.

The Inquiry took written and oral evidence from patients, carers, charities, clinicians and service providers.

MEA COMMENTS

We very much welcome the key recommendations contained in the interim report.

They reflect almost all of the key issues that people with ME/CFS feel very strongly about.

In particular, they are very concerned about the postcode lottery which means that some people have no NHS referral service at all whereas others are referred to services which place far too much emphasis on behavioural managements such as CBT and GET. These are approaches that some people with ME/CFS find ineffective or, in the case of GET, make their symptoms worse. We therefore hope that NICE will seriously address the recommendation in the report to thoroughly review their guideline advice about CBT and GET.

The MEA believes that the current lack of services for children, adolescents and the severely affected is a national scandal. As recommended in the interim report, this deficit must now be addressed by the PCTs – many of whose Chief Executives did not even bother to respond to the request for information from the APPG.

Finally, we agree that there needs to be sound research carried out into the underlying physical cause and epidemiology of ME/CFS. The epidemiological research could involve the research networks that have been set up within primary care. Epidemiology should also build on the primary care disease register that has been set up and developed as one of the strands of epidemiological research carried out through the ME Observatory. NB: The disease register now contains details on around 500 cases, including the severely affected cohort which has been transferred from the CHROME database.

KEY FINDINGS AND RECOMMENDATIONS FROM THE INTERIM REPORT

• The Department of Health must undertake research to accurately assess the number of people with ME/CFS.

• Recommendations from the 2002 Chief Medical Officer’s report regarding service provision must be addressed.

• All PCTs should ensure that they provide a full range of diagnostic and physician-led management services for people with ME/CFS.

• PCTs must ensure that there are adequate services for children and adolescents.

• The needs of the severely affected should be given high priority.

• PCTs should have meaningful consultation with patients and local groups about services and service development.

• A National Service Framework for ME/CFS should be created.

• The Royal Colleges must ensure that medical students receive training in both diagnosis and management.

• Professional organisations responsible for other health professionals must also ensure proper training and continuing professional development .

• The Department of Work and Pensions should review its guidance in relation to benefit assessments.

• NICE should review its guideline on ME/CFS – especially the sections on CBT and GET.

• The APPG welcomes the Medical Research Council initiative which places emphasis on the need for biomedical research into the underlying cause of ME/CFS.

OTHER ISSUES DISCUSSED AT THE MEETING

APPG LEGACY PAPER

A copy of the current draft is available in the paperwork for the meeting. This can be found in the MEA website news section.

Further comments can still be submitted to the APPG. This matter will be considered again at the next APPG meeting in 2010.

XMRV RESEARCH

Charles Shepherd presented a brief summary on current research activity relating to XMRV.

Notes from this presentation:

Everyone is by now familiar with the XMRV research findings from America.

This is a brief update on what is happening regarding follow up studies.

Clearly, there is an urgent need to see if other research groups, in other countries, using other laboratories, can replicate the American findings.

Patient selection is very important. Studies involved stored blood samples are going to have difficulty in finding samples from people who meet both Fukuda and Canadian diagnostic criteria – as were used in the American study. But this should be less of a problem when using new clinical cases.

If the results are consistently replicated, we can then move on to looking at the pathogenicity of the virus (ie is it a disease causing virus) and even antiviral treatment.

XMRV was discussed in some detail at the Medical Research Council Expert Group Workshop on November 19/20 where there were four UK researchers present who are actively involved in XMRV research:

• Dr Jonathan Stoye – National Institute for Medical Research
• Dr Kate Bishop – NIMR
• Dr Jonathan Kerr – St George’s Hospital
• Dr Suzanne Hagan – Glasgow Caledonian University

There are several other UK virologists involved with XMRV research as well – including Prof Greg Towers at University College. London, whom CS recently met for an afternoon discussion.

So replication studies and other XMRV research is taking place, or is about to take place, here in the UK.

MERUK plus IRISH ME TRUST has just funded an XMRV replication study in Sweden.

The MEA Ramsay Research Fund has money available for UK studies – but money does not appear to be an immediate problem in the UK.

It looks as though there may even be some early results from replication studies before the end of the year.

On the subject of blood donation, the MEA has been in correspondence with the Chief Medical Officer, Sir Liam Donaldson – who has repeated the guidance that people with ME/CFS should not donate blood until they have fully recovered. Various expert groups are considering the implication of XMRV being present in the healthy population in relation to blood donation – in view of the US prevalence figure of around 4%.

Version 4 of the MEA position statement on XMRV, which includes the exchange of correspondence on blood donation with the CMO, can be found on the MEA website.

ACCESSIBILITY OF VENUES FOR FUTURE APPG MEETINGS

There was a short discussion on the pros and cons of using meeting rooms in either the House of Commons or Portcullis House for future APPG meetings. Des Turner pointed out that one of the problems with Portcullis House is that the large rooms are very heavily booked and the small rooms are too small.

DWP EMPLOYMENT AND SUPPORT ALLOWANCE

Des Turner referred to the continuing difficulties people were having with the new ESA and the need for people to notify the charities when serious problems were arising. A short discussion followed, which included reference to the various measures – appropriate and inappropriate – that are being used to try and help people back into work and the difficulty in finding suitable welfare rights advisers.

WELFARE REFORM BILL

Peter Spencer referred to a briefing paper that had been prepared by himself and the Countess of Mar. This can be accessed in the APPG paperwork on the MEA website. It was pointed out that the Countess of Mar had put a lot of work during House of Lords business into trying make changes to this legislation on behalf of people with ME/CFS.

ANY OTHER BUSINESS

With the close of the meeting imminent there was only time for short discussions on concerns relating to the change of name of the CNRCC to the British Association for CFS/ME, and how this organisation operates within the NHS (raised by Jill Cooper) and some further criticisms of the Lightning Process.

DATE OF NEXT MEETING

It was agreed to try and hold one further meeting, possibly in February 2010, before the General Election takes place – presumably in May 2010.

After the Election, there will need to be a meeting to reform the APPG. At present, it looks as though this could be taking place in late May or June, which would probably mean no other meetings before the 2010 summer recess.

Prepared by Dr Charles Shepherd
Hon Medical Adviser and Trustee

The ME Association

Register of All-Party Groups and Guide to the Rules on All-Party Groups

Shortlink: http://wp.me/p5foE-2sb

The Register of All-Party Groups [As at 20 October 2009] is here:

http://www.publications.parliament.uk/pa/cm/cmallparty/register/memi01.htm

There are also links at the top of the Register for:

The Nature of All-Party Groups
Purpose and Form of the ‘Register of All-Party Groups’
Purpose and Form of the ‘Approved List’ of Groups
Administration of the Register and Approved List
Complaints about All-Party Groups

The APPG on ME’s current office holders and twenty qualifying members (made up of cross party MPs and members of the House of Lords) can be viewed here:

Register:

http://www.publications.parliament.uk/pa/cm/cmallparty/register/memi01.htm

All-Party Parliamentary Group on Myalgic Encephalomyelitis (ME)

http://www.publications.parliament.uk/pa/cm/cmallparty/register/memi420.htm

Note that the Group details have not been updated since the AGM in July 2009.

The Office of Secretary to the APPG on ME became vacant following the standing down of Dr Ian Gibson from his seat for Norwich North, on 8 June 2009.

The Countess of Mar was elected to the Office of Secretary at the group’s AGM, on 8 July 2009.

Note also that the Chair, Dr Des Turner, MP, announced at the AGM that it was not his intention to stand at the next general election and that therefore a new Chair would need to be found at that point.

Guide to the Rules on All-Party Groups:

http://www.parliament.uk/documents/upload/PCFSGroupsRules.pdf

Page 17

General elections

If your group is NOT on the Approved List: this section applies to your group.

5. Once a general election has been publicly announced we write to groups with information about what action they need to take after the election. In essence, unless the group reregisters within two calendar months from the date when parliament first meets after a general election, it is removed from the Groups’ Register, and from the Approved List (if it is on the latter).8 The purpose of this is to allow groups some continuity from parliament to parliament and to give them time to appoint new officers, enrol new members etc.

6. In order to re-register after a general election a group has to hold an inaugural election of officers (which counts as the group’s first AGM of the new parliament) then complete and return the ‘Application Forms for Cross-Party Groups’, within the 2 month period.

[8] The only exceptions are registered groups funded by Her Majesty’s Government (currently only the British- American Parliamentary Group); such group are not required to re-register.

——————

The APPG on ME website now has PDF copies of Minutes of APPG meetings going back to 31 January 2001 collated at:  http://www.appgme.org.uk/minutes/mintues.html

Clarification regarding membership of the APPG on ME

There have been misunderstandings on some forums that AfME (Action for M.E.), the MEA (The ME Association), AYME (Association of Young People with ME), TYMES Trust (The Young ME Sufferers Trust), The 25% ME Group, ME Research UK, BRAME (Blue Ribbon for Awareness of ME) and RiME (Campaigning for Research into ME) are all members of the All-Party Parliamentary Group on ME.

None of the above are members of the APPG on ME.

In the case of Associate Parliamentary groups, applications for membership may be accepted by the group’s officers from organisations, interest groups, commercial concerns and individuals other than MPs or Members of the House of Lords.

But the All-Party Parliamentary Group on ME is not constituted as an Associate Parliamentary Group and therefore only Members of the House of Commons or the House of Lords are permitted membership of the APPG on ME, and only Members of the House of Commons or Lords have voting rights at its meetings.

So the only members of the APPG on ME are parliamentarians.

From the office of the Parliamentary Commissioner:

“Groups are only required to register with us the names of their officers and of 20 ‘qualifying members’. The full membership list, including names over and above that, resides with the group and it is for them to ensure that it is comprehensive and up to date. [...] Any MP (ie not just signed up members of the group) is entitled to turn up at any meeting of the group, and to speak and vote at the meeting – unless a subscription is charged in which case voting may be restricted to paid-up members of the group.”

The APPG on ME group’s current office holders and the twenty qualifying members (made up of cross party MPs and members of the House of Lords) can be viewed at the link, below.

http://www.publications.parliament.uk/pa/cm/cmallparty/register/memi417.htm

Under “BENEFITS RECEIVED BY GROUP FROM SOURCES OUTSIDE PARLIAMENT” Action for M.E. and The ME Association are listed as jointly providing the secretariat to the group.

“Action for ME and The ME Association both provides secretarial support (addressing and stuffing envelopes, taking minutes, photocopying).”

As joint secretariat, Action for M.E. and the ME Association undertake the circulation of minutes and agendas for these meetings but they are not members of the APPG Group and their status as organisations and that of their representatives in relation to the group is no different to that of any other organisation that sends a representative to attend these meetings.

Although APPG groups are not permitted to advertise their meetings as “Public Meetings”, meetings of the APPG on ME are held in House of Commons committee rooms and are open to members of the public, that is, national ME patient organisations, representatives of the committees of “local” and regional ME support groups and other interested parties; they are also open to individual members of the ME community and their carers, who can and do regularly attend and contribute to these meetings.

ME Research UK : a research organisation and a registered charity (Scotland), represented at APPG on ME meetings by Mrs Sue Waddle, a former trustee of Invest in ME.

BRAME : unregistered, non membership, run by Christine Harrison and her daughter, Tanya. Both Christine and Tanya attend APPG on ME meetings.

RiME : unregistered, non membership, run by Paul Davies. Paul Davies attends APPG on ME meetings, sometimes supported by other individuals.

A number of ME sufferers and carers of ME sufferers attend APPG on ME meetings and their names are listed as attendees in the minutes of meetings and their contributions to these meetings are minuted.

I hope this clarifies any misconceptions about policy and proceedings at these meetings and the status of the organisations and individuals who attend them.

ME Association: Interim report of the APPG on ME inquiry into NHS Services

Shortlink: http://wp.me/p5foE-2rY

http://www.afme.org.uk/news.asp?newsid=701

News

APPG press release on NHS inquiry

03 December 2009

The All-Party Parliamentary Group (APPG) on ME has today launched the interim report on its Inquiry into NHS Service Provision for ME/CFS.

Dr Des Turner MP, Chair of the APPG said the evidence submitted to the Group made it clear that the Department of Health (DoH) and the National Health Service (NHS) needs to significantly increase its efforts to ensure that people with ME/CFS get adequate treatment.

“Currently, services offered to patients with ME/CFS are patchy and we have heard of numerous cases where treatment has simply not been available to any adequate standard. This is confounded by delays in diagnosis and failings on the part of General Practioners to recognise the disease or diagnose it,” said Dr Turner MP.

“We found unacceptable variation in provision between different health trusts which needs to be addressed.”

ME/CFS sufferers continue to be badly treated by the Department of Work and Pensions (DWP) and find great difficulty in accessing disability benefits.

The interim report with recommendations is attached.

——————–

From the ME Association

ME Association: Interim report of the APPG on ME inquiry into NHS Services

A copy of the APPG Interim Report, along with the press release issued by the APPG, can be found in the NEWS SECTION of the MEA website: http://www.meassociation.org.uk

I will be preparing a fairly comprehensive summary of the APPG meeting and hope to have this completed by the end of today (Dec 3rd).

The summary will also contain the MEA response to the Interim Report.

Dr Charles Shepherd
ME Association

—————-

Interim report of the APPG on ME inquiry into NHS Services

Thursday, 03 December 2009 10:43

The interim report of the All Party Parliamentary Group on ME inquiry into NHS services for people with ME/CFS was launched at the group’s meeting in the Commons yesterday (Wednesday 2 December 2009).

In a press statement issued after the meeting, APPG chairman Dr Des Turner MP said the evidence submitted to the group made it clear that the Department of Health (DoH) and the National Health Service (NHS) needs to significantly increase its efforts to ensure that people with ME/CFS get adequate treatment.

Dr Turner said: “Currently, services offered to patients with ME/CFS are patchy and we have heard of numerous cases where treatment has simply not been available to any adequate standard. This is confounded by delays in diagnosis and failings on the part of general practitioners to recognise the disease or diagnose it.”

“We found unacceptable variation in provision between different health trusts which needs to be addressed.”

The parliamentarians said that people with ME/CFS continue to be badly treated by the Department of Work and Pensions (DWP) and find great difficulty in accessing disability benefits.

The interim report and recommendations can be read by clicking here:

http://www.meassociation.org.uk/images/stories/appg_interim_report_v1.pdf

The ME Association hopes to be publishing its own response to the interim report later today. When it is available, it will be published at this website.

——————–

APPG on ME meeting: Wednesday 2 December 09

Inquiry into NHS Service Provision for ME/CFS 

(Last night’s scanned PDF has now been replaced by the official PDF from the secretariat)

Click link for PDF:  Official PDF of APPG Interim Report v1

Update @ 7.00pm

I hope to have a copy of the “Interim Report” on this site in some format, tomorrow or later today.

Update @ 3.15pm

I am advised direct from the meeting that an interim report has been handed out because the Final Report is not ready  – why am I not surprised?

 

Shortlink: http://wp.me/p5foE-2rx

If you are planning to attend today’s meeting in House of Commons Committee Room 14 between 3.15-4.45pm please allow time for passing through security and locating the meeting room.

A bunch of friendly people will be meeting up beforehand for coffee and a chat from

2pm, Jubilee Cafe, just off Westminster Hall

 

I am anticipating live updates from the meeting. 

Information on the launch and publication arrangements for the APPG on ME’s report resulting out of its unofficial inquiry into NHS service provision for people with ME is expected to be announced this afternoon.  I will post information at the top of this posting and a copy of the report and any press notices as soon as these materialise.

Yesterday, the APPG on ME issued four documents:

Minutes of October 09 APPG on ME meeting

Verbatim transcript of October 09 meeting

APPG on ME Legacy Paper

APPG update on Welfare Reform Bill

 

Jump to this post to download these all four documents in Word format:  http://wp.me/p5foE-2r9

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For RiME’s “MPs Referendum on ME Research” go here:  http://www.rime.me.uk/MPs_Referendum.htm

For the APPG on ME’s Legacy Paper go here:  http://wp.me/p5foE-2r9

For those interested in scrutinising or commenting on Action for M.E. and AYME’s draft “Election Manifesto for M.E.” go here:

http://www.afme.org.uk/news.asp?newsid=671

Election manifesto for M.E.
09 January 2010

Election manifesto for M.E.

As the General Election approaches, Action for M.E. and the Association of Young People with M.E. (AYME) – in conjunction with The Princess Royal Trust for Carers – have produced a draft manifesto to draw the attention of the political parties to the issues which affect people with M.E.

http://www.afme.org.uk/res/img/resources/Election%20manifesto%20draft%2028.10.09%20with%20survey%20link.pdf

This has been based on ideas submitted through an initial online consultation with people with M.E. but we now seek views on the draft manifesto as a whole. If you think we’ve got it wrong or you have other ideas, please let us know your views by completing our short survey before 8 January.

https://www.surveymonkey.com/s.aspx?sm=s6Z_2bDPZYrMM0toczWL2xew_3d_3d

Action for M.E. and AYME will invite parliamentarians of all key parties to sign up to the policies identified in the final manifesto and will proactively approach them to request their support.

RiME: Summary of APPG Meeting 21.10.09

Shortlink: http://wp.me/p5foE-2rr

Permission to Repost

Campaigning for Research into ME (RiME)  www.rime.me.uk

Dec. 1 2009

To Tristana Rodriguez AfME,

Today, the day before the APPG meeting, you have released (1) the minutes of the last meeting (2) a draft of the APPG Legacy Document.

It would seem you expect ME patients to read and digest all of this, before tomorrow’s meeting?

This is totally unacceptable and the matter needs to be discussed at tomorrow’s meeting.

It leads ME patients to ask, ‘Do the people running the APPG on ME understand what the neourological illness Myalgic Encephalomyelitis is?’

Yours Sincerely,

Paul Davis RiME

cc interested ME parties

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Permission to Repost

Campaiging for Research into ME (RiME)  www.rime.me.uk

Summary of APPG Meeting 21/10/09

1.31 pm Meeting starts. Dr. Des Turner MP Chair says that the APPG will have to be reformed after the General Election in 2010. A legacy paper is being prepared – comments on the second draft of the paper must be sent to the Secretariat by November 20.

Dr. Turner says the date of next APPG meeting will be December 2nd. On the agenda will be the services inquiry report with the possible attendance of a Health Minister. He says that only AfME and the MEA will see the draft report.

Paul Davis RiME says that RiME has received over 50 copies of evidence submitted to Inquiry. Having read the large majority, with the exception of one, they are all negative. ME patients say the basis on which they were set up – CMO Report is bogus and they don’t want them. Period. Matters of structure, finance, post-code lottery are irrelevant.

Christine Harrison BRAME said she wanted to inject a note of optimism – I didn’t catch what she said after that.

Ciaran Farrell: re. consultation on Inquiry Report: the report needs to be circulated ahead of time so there can be a proper, informed discussion at next meeting.

Paul Davis said re. Oral Presentations that the Chair had allowed matters outside the Terms of Reference to be discussed.

Dr. Turner said something about being flexible.

Paul Davis specifically mentioned the Lightning Process: Did the Chair not only allow someone to talk about it but comment positively on it himself? To our knowledge LP isn’t being practiced in any of the clinics set up following the CMO Report.

Ciaran Farrell supported Paul Davis on the matter of LP and asked Dr. Turner if he is prepared to make a statement about how and why he was being flexible. Dr. Turner declined to do so.

Dr. Turner said we need to look at all treatments.

Michelle Goldberg ME patient talked about various forms of abuse; “Institutional domestic violence”.

Janice Kent Remember talked about misdiagnosis and says that other illnesses are treated better.

Dr. Shepherd MEA bemoaned lack of medical help and expertise.

Dr. Turner mentions XMRV Virus and ongoing research in America.

Paul Davis thanked the Chair for mentioning XMRV but pointed out that the British Government still isn’t funding any biomedical research.

Colin Barton Sussex Group said that some research might be carried out at Barts.

Annette Barclay raised concerns and said who would want Barts doing such research? Several put their hands up in support of Annette.

2.09pm – Yvette Cooper Secretary of State for DWP enters, accompanied by Dr. James Bolton, Deputy Chief Medical Adviser to DWP.

Ms. Cooper talked about her own experience, saying she had been ill with ME for two years (1993-5) and off work for a year. She outlined the changes to the care, welfare and benefits system – especially the introduction of Employment and Support Allowance (ESA) to replace Incapacity Benefit and the role of Work Capability Assessment (WCA) in deciding eligibility for ESA. She said she understood concerns re. the fluctuating nature of ME and the need for a flexible approach re. return to work. She believed the ESA and WCA took those issues into account. Re. DLA: she said that DLA for people of working age was not under review.

Dr. Turner raised the issue of problems with tribunals. Examples of unsatisfatory procedures were mentioned by several attendees. Ms Cooper said tribunals were classed as ‘independent’ and their administration came under the Ministry of Justice.

Dr. Shepherd asked Dr. Bolton if he would meet with ME charity representatives to discuss concerns in more detail. He said yes. Shepherd says in his notes that this will be followed up via Forward-ME.

2.55pm Ms. Cooper left

Jill Cooper West Midlands Group Consortium read out a further statement to do with issues about patient representation, transparency, and the education and training program of the Co-ordinating Clinical and Research Network and Collaborative (CCRNC). She said that WMMEG had received a copy of the CCRNC Constitution from Dr. Esther Crawley. The document excludes anyone who does not support the NICE Guidelines. This practice is at variance with the Health Department’s position on patient representation which is to ‘provide a free exchange of ideas, questions, comments or criticisms… ‘

Dr. Shepherd confirmed that charities who do not support the NICE guidelines are excluded from the CCRNC.

Lady Mar and Jill Cooper disagree over CCRNC.

Ciaran Farrell said there is a great deal of concern about the NICE guidelines and that it was unfair and unreasonable to exclude people from the CCRNC.

Colin Barton objects to criticism of clinics saying many are being treated at them.

Annette Barclay and Jill Cooper disagree with him.

3.10 pm – Meeting Ends.

Disclaimer: the above is based on my and others’ scribbled notes; cannot guarantee 100% accuracy.

Overview

RiME got something in last week re. Legacy Document.

RiME’s submission said the performance of the APPG 1999-2009 had been disappointing, and concluded:

We deem the best criteria for adjudging the APPG 1999-2009 is to simply ask the question, ‘are ME patients better off now?’ Answer: No. Indeed, many would say they are worse off. The text above has focused upon concerns re. services and research. But are there not still problems in other areas such as welfare and child protection?

If those running the APPG were to counter by saying, we are essentially about awareness, not lobbying – then two questions come to mind (1) is awareness enough? (2) has the APPG been portraying an accurate picture eg has it painted too rosy a picture re. the clinics?

RiME recommends:

1. A fresh start with five new officers following 2010 General Election…

2. An independent Secretariat.

3. Detailed attention to matters of nomenclature and classification.

4. The focus to be on biomedical research…

Paul Davis rimexx@tiscali.co.uk     www.rime.me.uk

APPG on ME: Minutes, Transcript, Legacy Paper, Updates to Welfare Reform Bill

Shortlink: http://wp.me/p5foE-2r9

If you are planning to attend the meeting on Wednesday 2 December a bunch of friendly people will be meeting up before the meeting for coffee and a chat.

2pm, Jubilee Cafe, just off Westminster Hall

A number of APPG on ME documents have been circulated, today.

 

Minutes of the APPG on ME annual general meeting, held on 21 October 2009:

Word doc:   APPROVED MINUTES APPG on ME 21 10 2009(2)

 

Verbatim transcript:

Word doc:  APPROVED Transcript APPG 21 October 2009

 

APPG on ME Legacy Paper: 

(NB: the paper uploaded was an incorrect version supplied by the APPG on ME secretariat; it has been replaced with the correct paper below.)

Word doc: DRAFT APPG legacy paper V5 27 11 2009 (2)

 

Updates to Welfare Reform Bill:

Word doc: All Party Parliamentary Group on ME Update on Welfare Reform Bill 23 11 2009

(The Welfare Reform Bill will be discussed at the next APPG, tomorrow, Committee Room 14, House of Commons, 3.15 – 4.45pm.)

 

Please be advised that the next meeting of the APPG for M.E. will now be held in House of Commons committee room 14, as opposed to room 15.

Agenda for the next APPG for M.E., sent on behalf of Des Turner MP, chair of the APPG.

AGENDA

Meeting to be held 3.15-4.45pm, Wednesday 2 December 2009,

Committee Room 15, House of Commons

1. Welcome by the Chairman

2. APPG Report on the Inquiry into NHS Services

3. Speaker: Mike O’Brien MP, Minister of State for Health Services

4. Minutes of the last meeting

5. Matters arising

- APPG legacy paper (in preparation for the General Election)

- New research: murine leukaemia virus-related virus (XMRV)

- Accessibility of venues for future meetings

6. Welfare update

- Employment and Support Allowance

- Welfare Reform Bill

7. Any other business

8. Date of next meeting

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UK Parliament All Party Group on ME meeting on Wednesday the 2nd of December

(Previously published on 29 November on Co-Cure mailing list)

The ME community in England are approaching what could turn out to be a critical All Party Group APPG meeting and possibly the last or the penultimate meeting of the APPG before the General Election. When the UK Parliament is dissolved for the General Election all APPGs are dissolved and must be re created in the new Parliament if they are going to continue to exist. A number of the parliamentarians who are central to the APPG including its Chair Dr. Des Turner will not be standing again or are unlikely to be re-elected.

The APPG is concluding its inquiry in NHS services for people with ME and this is one of the main foci of the meeting to be held on Wednesday the 2nd of December. The other main focus of the meeting will be  that the Health Minister Mr. Mike O’ Brien will be the guest speaker and he has been invited to discuss the findings of the inquiry.

The object of the inquiry is to try to get the UK Parliament’s Health Select Committee to take up the inquiry’s recommendations and conduct a further inquiry along similar lines. Therefore the  implications of the APPG inquiry may have far reaching consequences because the Health Select Committee is far more powerful than the APPG and if the APPG is successful in getting their inquiry on the Select Committee’s work programme the APPG’s inquiry initiative will live on after the General Election.

The subject of the inquiry has been the subject of significant discussion at APPG meetings as the way in which the inquiry has been conducted has been controversial. The situation about the minutes / transcript of the previous APPG meeting of the 21st of October is unsatisfactory. I have made enquires of Action for ME who provide the Secretariat for the APPG about these documents and it would appear that AfME have not yet received the verbatim transcript from the Hansard stenographic service from which AfME’s Heather Walker writes up the minutes and the condensed transcript. I think the verbatim transcript may very well be on a 60 day service and this is why it  is not ready.

The latest minutes that are available on the website that has been set up for the APPG are those of the 1st of April as can be seen at :-

http://www.appgme.org.uk

The minutes and transcript of the 8th of July meeting have not been placed on this website and can only be found I think on AfME’s and the ME Association’s websites. Therefore it is clear from this and from the lack of more modern material on the APPG’s Inquiry that this website is not being kept up to date.

The APPG Inquiry Panel held two oral Evidence Sessions on the 9th and the 16th of July and there are no official minutes, write ups or transcripts of these two meetings despite the fact that the APPG Chair Dr. Des Turner made a public commitment to publish the transcripts of the Oral Evidence Sessions at the start of the first Oral Evidence Session. There may have been technical difficulties involved which might have prevented a written transcript being made from the audio recordings of these meetings, but if this were the case, there has been no statement from the APPG Secretariat or Chair that they have been unable to follow through on the Chair’s public commitment to publish these transcripts.

At the last APPG meeting on the 21st of October Dr. Turner decided that despite representations made  to him by Paul Davis of RiME and myself that the APPG Inquiry report ought to be made available ahead of the 2nd of December meeting to enable effective consultation on the report through a fully informed discussion at the meeting, he would not allow the report to be released to the public before the meeting. He considered that the report would loose impact if it came out in what he described in drips and drabs, but he conceded that a summary of the report, or a summary of the report’s recommendations might be made available on Tuesday evening, and that he would make copies of the full report available to the MEA and AfME on a confidential basis.

It was not clear what procedures/mechanisms would be used to disseminate the summary of the report on Tuesday the 1st of December or who would be involved in operating them. This therefore places a question mark over whether or not any form of summary of the inquiry’s report will indeed be made available prior to the APPG meeting on Wednesday the 2nd of December, and also if copies of the full report will be made available at the APPG meeting itself.

This places ME sufferers and carers who attend as members of the public at APPG meetings in a very difficult position as the matter of the inquiry report is listed on the APPG meeting agenda and we either will only have a summary of the report, or perhaps not even that with which to prepare for the meeting where it is expected that the report will be endorsed. Even if full copies of the report are available at the meeting I do not consider that it would be fair or reasonable to expect participants to have to read the report whilst those in the know who already have read their copies of the report discuss the report’s contents with a view to endorsing the report and its recommendations.

I therefore consider that the inquiry panel made up of the parliamentarians drawn from the core membership of the APPG has not made adequate information available for there to be proper public scrutiny of their work, and neither will there be an opportunity for proper or adequate consultation on the findings and recommendations of the APPG on ME’s inquiry into NHS services for people with ME.

I consider that the ME community ought to think through what the implications of simply going along with the endorsement of the inquiry report might be. The inquiry panel have trailed the fact that they have found a very mixed picture in terms of some areas of the country being served by CFS clinics that principally offer only limited diagnostics and psychologically based treatments which comprise CBT and GET. There is approximately 60% coverage of current service provision for adult services and only 15% national coverage for children.

Where a Primary Care trust, PCT does not have a CFS clinic in its catchment area a PCT can contract into a service provided through another PCT, but not all PCTs do this and what are the service issues involved in patients being passed over into to another health service area in order to attend a CFS
clinic?

What view will the inquiry take about the issues around CBT and GET, and will they recommend that these psychological treatments be made available to all ME sufferers in order to overcome the CFS clinic post code lottery, or will they take a more sophisticated approach?

What view will the inquiry report take towards the applicability of CBT and GET in general and at the CFS clinics in particular?

Where there are CFS clinics or adequate access to them further a field there are specialist services for ME patients, but are these services meeting need and what advantage do they offer, if any, over generalist services available at the local hospital or through the patient’s primary care or GP service?

One specific area of controversy that may come up within the inquiry report might be the issue of the Lightning Process, LP, which the inquiry panel took a considerable interest in despite the fact that it does not really fall within the terms of reference of the inquiry as LP is not a treatment offered by the NHS. At the APPG meeting of the 21st of October Dr. Turner was asked by Paul Davis and I to explain the inquiry’s interest in LP and he responded that LP was a potential treatment for ME on the NHS and that he as Chair of the inquiry panel was being flexible about the inclusion of LP within the bounds of the inquiry and also in the way in which the inquiry had invited a witness to the Second Oral Evidence Session to give evidence on LP which was very positive. Some of the other patient witnesses at that session did point out that there was another less positive side to LP, but the panel did not invite another witness to put the opposing view. The panel spent a considerable amount of time on LP with the effect that other areas of inquiry such as children’s services were allocated less time even though they quite clearly fell within the main remit of the inquiry’s terms of reference.

This rather begs the question of whether or not the inquiry panel simply meandered a bit off topic and off task by dwelling so long and delving comparatively deeply into LP, or does the inquiry panel intend to take a specific view about LP, and if so, will they be making any recommendations about LP in their report about LP being a potentially effective treatment that might be offered on the NHS?

Therefore I would suggest that it would be a good idea for the ME community and most particularly the PWME regular attendees at APPG meetings to discuss there matters before the meeting, and even to hold a brief pre-meeting prior to the APPG itself in order to arrive at some kind of general consensus about how the above and other issues might best be handled at the APPG meeting itself.

Ciaran Farrell

29 November 2009