RiME: Newsletter No. 11

Paul Davis of RiME has recently issued a Newsletter.

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

RiME Newsletter No. 11

Permission to Repost

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

RiME Newsletter No. 11 is now available. Items include:

ME: Activism + Organisation: The Need for Change

MPs Referendum on ME Research

NHS Services Inquiry: RiME Bank of Evidence

ME Association – Running with Hare and Hounds?

What does Lady Mar stand for? Forward-ME Condemned

MRC – Freedom of Information

Lightning Process

Conservatives + Lib Dems – latest.

If you want a copy posted to you, please send SAE plus 4 unused postage stamps (the few who have sent contributions over last year will get it anyway).

In order to survive, RiME depends on contributions from its supporters. We welcome unused postage stamps.

Paul Davis

10 Carters Hill Close, Mottingham, London, SE9 4RS   rimexx@tiscali.co.uk  

www.rime.me.uk

MEA summary of meeting of APPG on ME (21 October 2009) and APPG Legacy paper

http://www.meassociation.org.uk/content/view/1053/161/

1] MEA summary of meeting of APPG on ME (21 October 2009)

(Note this is a brief personal summary published by Dr Charles Shepherd on behalf of the ME Association and not the official meeting Minutes.  The Minutes and possibly a verbatim transcript will be issued at a later date by the  secretariat on behalf of Dr Des Turner, Chair, APPG on ME.)

2] APPG on ME launches legacy paper consultation

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

MEA summary of meeting of APPG on ME (21 October 2009)

This is a very brief summary of key points from the APPG meeting held on Wednesday 21 October in Committee Room 21 at the House of Commons.

The meeting was Chaired by Dr Des Turner MP.

Among parliamentarians present were the Countess of Mar, Russell Brown MP, Andrew Stunell MP, Bill Wiggin MP, and Tony Wright MP..

Representatives from charities and other organisations included those from AfME, BRAME, Kent and Sussex Alternative Group for ME, The MEA, reMember, RiME, Sussex and Kent ME Society, WMMEG and the 25% Group. There were also several members of public present.

A more detailed account of the meeting will appear in the Minutes, which will be posted on the APPG website when they have been through the drafting process and agreed.

PRESENTATION FROM THE RT HON YVETTE COOPER MP, SECRETARY OF STATE FOR WORK AND PENSIONS (DWP)

The main item was a presentation from the Rt Hon Yvette Cooper MP, Secretary of State for Work and Pensions, on benefit issues. Yvette was accompanied by Dr James Bolton, Deputy Chief Medical Adviser at the DWP.

Yvette explained that she had a strong personal interest in ME having suffered from it for a period starting in 1993 before entering parliament. During this time she was very ill for a period of roughly two years and completely off work for a year. This was followed by a period of recovery with more variable health over another two years. She has now made a full recovery and manages to combine being an MP, Minister and bringing up three children! During her early days in parliament she was actively involved with the APPG when it was chaired by Tony Wright MP. However, she did not feel it was appropriate to make general assumptions about ME/CFS based on her own experience.

Yvette briefly outlined the aims behind changes to the care, welfare and benefit systems that are now taking place –in particular the introduction of Employment and Support Allowance (ESA) to replace Incapacity Benefit and the role of the Work Capability Assessment (WCA) in deciding eligibility for ESA. Following on from her personal experience with ME she fully understood the concerns being expressed about assessing the fluctuating nature of ME/CFS and the need for a flexible approach regarding any possible return to work. She believed that the new WCA for ESA claimants took these problems into account. However, she was very willing to look at the problems that were raised during the meeting.

Yvette answered a series of questions from the Chair, who also read out written questions that had been submitted in advance of the meeting, along with questions from those attending the meeting. Yvette had only intended to be there for around 20 minutes but managed to stay for about an hour.

Questions relating to all the common and very familiar problems facing people with ME/CFS were discussed. In particular:

• The role of the new Work Capability Assessment for ESA claimants – especially in relation to people being unable to sustain physical/mental activity and the post-exertional symptomatology experienced by people with ME/CFS. In response, Yvette pointed out that this assessment should not depend on a precise diagnosis but on what a claimant could and could not do from the point of view of physical and mental function.

• The type of information and training on ME/CFS that is given to DWP decision makers and examining doctors. In response, Yvette maintained that adequate training in relation to specific illnesses such as ME/CFS was part of the DWP programme.

• Difficulties in accessing assessment centres. In response, she noted these concerns, agreed that the centres must be accessible to people with disabilities, and said she is very keen to hear of specific examples.

• The way in which a patient’s own GPs and specialist were progressively being removed from the opinion gathering process and replaced by doctors who knew nothing about the patient’s social and medical background. In response she noted these concerns but did not indicate that there would be any shift in the DWP position.

• Providing real help for people who can and want to return to work on a flexible and/or part time basis. In response, she agreed that this was vital – citing her own experience of a gradual and flexible return to work after having quite severe ME.

• Reviewing the permitted work rules – which can be very unhelpful in the case of ME/CFS. These concerns were sympathetically noted.

• Des Turner raised the specific issue of problems with tribunals and the knowledge about ME/CFS of those who sat on the panels making these decisions. Examples of very unsatisfactory procedures at tribunals were mentioned by several of those present. In response, Yvette managed to somewhat duck the issue by explaining that the tribunals are classed as being ‘independent’ and their administration comes under the Ministry of Justice. This is clearly going to remain an important issue on the parliamentary agenda.

• Tony Wright MP made the point that something was clearly wrong with the benefit assessment system when so many people with ME/CFS were failing on their first application but then being successful on appeal.

• Charles Shepherd questioned the DWP auditing and monitoring of the success/failure rate of applications for ESA from people with specific illnesses, including ME/CFS. In response, Dr Bolton explained that no figures are available.

• With regard to DLA and the government Green Paper, Yvette was asked about the mixed messages coming from ministers on the future of DLA. In reply, she acknowledged the concerns being expressed and made it clear that DLA for people of working age was not under review. She stated that a government statement on DLA would be made on Wednesday 22 October by the Rt Hon Andy Burnham.

At the end of this presentation. Charles Shepherd asked Dr James Bolton if he would be willing to meet with ME/CFS charity representatives to discuss these concerns in more detail and he agreed to do so. This meeting is now being followed up through the Forward ME group.

OTHER MATTERS

APPG INQUIRY INTO NHS SERVICES IN ENGLAND Des Turner explained that the report was now being written with the intention of having it ready for presentation to the APPG at the next meeting in early December. A Minister from the Department of Health will be invited to attend this meeting to respond to the report.

APPG LEGACY PAPER Des Turner explained that the APPG would have to be reformed after the general election – which will have to take place before June 2010. And with him standing down as an MP we would need to find a new Chair in 2010. To coincide with the winding up of the APPG, a Legacy Paper is being prepared which outlines the key areas of work and actions that have been taken by the APPG during the current parliament, as well as future actions. The APPG is keen to receive input on this from people with ME/CFS and a copy of the current draft will be posted on the APPG website. Comments on this draft must be received by the Secretariat by 19 November – so that further discussion on a further draft can take place at the December meeting.

STATEMENT BY WMMEG (West Midlands ME Groups Consortium): Jill Cooper read out a further statement relating to issues about patient representation, transparency and the suitability of the education and training programme provided by the ME/CFS Clinical and Research Network and Collaborative (CCRNC) This was followed by a very lively discussion on the current state of NHS services for people with ME/CFS.

XMRV: A rather informal discussion on various aspects of the new viral research findings took place.

Date of next meeting: Provisionally fixed for Wednesday 2 December

APPG website: www.appgme.org.uk

——————

http://www.meassociation.org.uk/content/view/1052/161/

APPG on ME launches legacy paper consultation

A consultation on the Legacy Paper for the All Party Parliamentary Group (APPG) on M.E. was launched yesterday (October 22).

The current Chair of the APPG, Dr Des Turner, intends to stand down at the next General Election, due sometime before 3 June 2010.

Comments on the draft APPG legacy paper should be sent to the Secretariat tristana.rodriguez@afme.org.uk  

This email address is being protected from spam bots, you need Javascript enabled to view it no later than 19 November 2009.

The Countess of Mar, who is Secretary of the Group, thanked people with M.E. and Action for M.E. for the work done so far in producing the draft.

The main speaker at the meeting was the Rt Hon Yvette Cooper MP, Secretary of State for Work and Pensions, who described her own personal experience of M.E. and answered a number of questions. In particular, she reassured people with M.E. that it was not the Government’s intention to change working-age Disability Living Allowance under current care reform proposals.

Other topics on the agenda included an update on the APPG Inquiry into NHS services, which is expected to produce a report before the next meeting of the APPG, which will take place on Wednesday 2 December 2009. A Minister from the Department of Health would be invited to attend.

In addition to the Chair, Dr Turner and the Secretary, the Countess of Mar, the meeting was attended by Vice Chairs Andrew Stunell MP and Tony Wright MP (Vice Chairs), plus Bill Wiggin MP and Russell Brown MP.

Minutes and a transcript of the meeting will be produced in due course.

Download Draft Legacy Paper in PDF

XMRV Retrovirus Whittemore Peterson CFS study Media Round up 12

XMRV Retrovirus Whittemore Peterson CFS study Media Round up: 12

WordPress Shortlink: http://wp.me/p5foE-2c2

Media

ABC News

http://abcnews.go.com/video/playerIndex?id=8864348

Good Morning America [ABC] -XMRV

 

Click here for interview with Dr. Donnica Moore about the link between the XMRV and ME/CFS

—————– 

New York Times

http://www.nytimes.com/2009/10/21/opinion/21johnson.html?pagewanted=2&_r=2

http://tinyurl.com/ykw4msd

October 21, 2009

Op-Ed Contributor
A Case of Chronic Denial
By HILLARY JOHNSON

EARLIER this month, a study published in the journal Science answered a question that medical scientists had been asking since 2006, when they learned of a novel virus found in prostate tumors called xenotropic murine leukemia virus-related virus, or XMRV: Was it a human infection?

XMRV is a gammaretrovirus, one of a family of viruses long-studied in animals but not known to infect people. In animals, these retroviruses can cause horrendous neurological problems, immune deficiency, lymphoma and leukemia. The new study provided overwhelming evidence that XMRV is a human gammaretrovirus – the third human retrovirus (after H.I.V. and human lymphotropic viruses, which cause leukemia and lymphoma). Infection is permanent and, yes, it can spread from person to person (though it is not yet known how the virus is transmitted).

That would have been news enough, but there was more…

Read full commentary by Hillary Johnson, author of Osler’s Web here

While you’re on the NYT site, email Hillary’s commentary to family, friends and contacts!

Hillary Johnson’s website here: http://oslersweb.com
Hillary Johnson blogs at: http://oslersweb.com/blog.htm

—————–

From Martin L. (Marty) Pall, via Co-Cure

21 October 2009

Mikovits and her colleagues published a paper and accessory materials in the journal Science, a highly respected journal and have also provided additional and in some cases more recent information elsewhere. In the Science publication they report that the XMRV retrovirus occurs in about 2/3rds of CFS/ME patients but only in 3.7% of normal controls. They also report that subsequently, using a more sensitive assay, XMRV occurs in over 90% of CFS/ME patients – we don’t know what the percentage is for normal controls using that more sensitive assay.

The virus was originally isolated from some aggressive prostate cancer cells. In addition, in unpublished data, it is also apparently shows high prevalence in fibromyagia patients and in atypical multiple sclerosis (MS) patients.

Comment: These data apparently show that XMRV is not specific for CFS/ME but rather occurs in other disease states, as well as in some normals. My own view is that this makes it much more likely to be an opportunistic disease, caused by the changes in immune function and other properties of these diseases, rather than a primary cause. Specifically, the retrovirus, based on its DNA sequence, has its replication stimulated by NF-kappaB activity, an activity that is elevated as part of the NO/ONOO- cycle and has been reported to be elevated in CFS/ME. Furthermore, the low NK cell activity and other types of immune dysfunction, that occurs in these various diseases,  may also be expected to stimulate the ability of the virus to maintain itself in disease sufferers.

In order to show that it is the primary cause of CFS/ME, it is necessary to show that XMRV follows Koch’s postulates, but so far it does not apparently follow Koch’s first postulate, which requires that it always occurs in people with the disease but does not occur in normals. The other three Koch’s postulates have not been tested.

In contrast to that, we have a good fit to the five principles underlying the NO/ONOO- cycle for both CFS/ME and fibromyalgia. Because one can argue that the fit to these five principles serve very much like Koch’s postulates for NO/ONOO- cycle disease, I will argue that we have a substantially more compelling case for a NO/ONOO- cycle etiology than we do for an XMRV infectious etiology for either CFS/ME or fibromyalgia.

That does not mean that XMRV is unimportant, however. Even if it turns out to be an opportunistic infection, like mycoplasma and HHV-6 are, it still may contribute to the etiology of the disease. And it still raises the question of whether we can cure cases of CFS/ME and fibromyalgia simply by normalizing the NO/ONOO- cycle as opposed to normalizing it and also using antivirals to depress XMRV and/or HHV-6. This is a question and I don’t claim to have the answer to it, although my hope is that normalizing the cycle will also cure at least some of these infections, that may not be true.

There have been comments in the media to the effect that this finally shows that CFS/ME is physiological, not psychological. This is true, but this should have been obviously true anyway, at least six or seven years ago. Nevertheless the media coverage of CFS/ME obtained by Mikovits and her colleagues must be viewed as a true gift to those interested in extending public knowledge of this disease.

Martin L. (Marty) Pall

Dr. Martin Pall’s NO/ONOO- Theory/Treatment Discussion Group: http://health.groups.yahoo.com/group/TenthParadigmSociety

The Tenth Paradigm – Dr. Martin Pall’s Website for CFS/MCS/FM/ETC: http://www.thetenthparadigm.org

—————–

NIH

http://www.nih.gov/researchmatters/october2009/10192009cfs.htm

October 19, 2009

Virus Linked to Chronic Fatigue Syndrome

Scientists have detected the DNA of a retrovirus in the blood of patients with chronic fatigue syndrome. The discovery raises the possibility that the virus may be a contributing factor in chronic fatigue syndrome.

Transmission electron micrograph of round virus particles.

XMRV virus particles seen by transmission electron microscopy. Image courtesy of University of Utah Health Sciences Public Affairs.

Chronic fatigue syndrome, or CFS, is a debilitating disease that affects millions of people in the United States. It’s characterized by profound fatigue that doesn’t improve with bed rest and can be exacerbated or re-kindled by physical or mental activity. A number of other symptoms are also associated with CFS, including cognitive deficits, impaired sleep, myalgia, arthralgia, headache, gastrointestinal symptoms and tender lymph nodes.

No specific cause for CFS has yet been identified. However, patients with CFS are known to have some abnormalities in their immune system. Recently, scientists found evidence of a virus called xenotropic murine leukemia virus-related virus, or XMRV, in the tumors of patients with prostate cancer. Some patients with XMRV-positive prostate cancer were reported to have a specific immune system defect that was also seen in CFS patients. Suspecting a link between the virus and CFS, a team of scientists from the Whittemore Peterson Institute at the University of Nevada, NIH’s National Cancer Institute (NCI) and the Cleveland Clinic set out to look for the virus in blood samples.

The scientists identified DNA from XMRV in the blood cells of 68 of 101 (67%) CFS patients, as reported in the online edition of Science on October 8, 2009. In contrast, the blood of only 8 out of 218 healthy people (3.7%) contained XMRV. Blood cells not only contained XMRV DNA, but also expressed XMRV proteins and produced infectious viral particles.

The researchers also found that XMRV stimulates immune responses in people with CFS. Plasma from 9 out of 18 CFS patients infected with XMRV reacted with a viral protein, whereas none of the plasma from 7 healthy donors showed a reaction.

“These compelling data allow the development of a hypothesis concerning a cause of this complex and misunderstood disease, since retroviruses are a known cause of neurodegenerative diseases and cancer in man,” says Dr. Francis Ruscetti of NCI, who worked on the project.

Retroviruses like XMRV have also been shown to activate a number of other latent viruses. This could explain why so many different viruses, such as Epstein-Barr virus, have been associated with CFS.

The researchers cautioned, however, that while this study found an association between XMRV and CFS, further work will be needed to determine whether XMRV truly contributes to the development of CFS.

“The discovery of XMRV in 2 major diseases, prostate cancer and now chronic fatigue syndrome, is very exciting,” says Dr. Robert H. Silverman, a co-author at the Cleveland Clinic. If a role for XMRV is established, there could be new opportunities for prevention and treatment of these diseases.

Related Links:
Chronic fatigue syndrome:
http://orwh.od.nih.gov/cfs/aboutcfs.html

—————–

Patient community websites and blogs

Cort Johnson’s Phoenix Rising website

http://aboutmecfs.org/Rsrcs/XMRVResources.aspx

Cort Johnson’s Blog and comments

http://aboutmecfs.org/blog/?p=990

“A supernova (pl. supernovae) is a stellar explosion. Supernovae are extremely luminous and cause a burst of radiation that often briefly outshines an entire galaxy”. This discovery has the potential for being a world changing event in every way for chronic fatigue syndrome patients. If it really works out – still an if – one almost has to think in inter-galactic terms to find an appropriate analogy of how different things could be five years from now…”

Check out “The Potential of XMRV” in the latest edition of ‘Bringing the Heat’ from Phoenix Rising.

—————–

This is ME – rutts tankespinn

http://merutt.wordpress.com/tag/chronic-fatigue-syndrome/

—————–

Previous ME agenda Media Round ups

Round up 12: XMRV Retrovirus Whittemore Peterson CFS study Media Round up 12: http://wp.me/p5foE-2c2

Round up 11: XMRV Retrovirus Whittemore Peterson CFS study Media Round up 11: http://wp.me/p5foE-2bB

Round up 10: Whittemore Peterson Institute XMRV retrovirus study link with CFS (Science journal):
http://wp.me/p5foE-2bk

Round up 9: Notice from Dr David Bell, Lyndonville News; Article by Paul R. Cheney MD, PhD:
http://wp.me/p5foE-2aQ

Round up 8: XMRV retrovirus study: Position statement from ME Association 14.10.09: http://wp.me/p5foE-2at

Round up 7: XMRV Retrovirus: Whittemore Peterson Institute: CFS: Media Round up 7: http://wp.me/p5foE-2aa 

Round up 6: XMRV Retrovirus: Whittemore Peterson Institute Chronic Fatigue Syndrome study: Videos and audios: http://wp.me/p5foE-29L 

Round up 5: Supporting Online Material for XMRV Chronic Fatigue Syndrome study: http://wp.me/p5foE-299

Round up 4: XMRV Retrovirus: Whittemore Peterson Institute Chronic Fatigue Syndrome study:
http://wp.me/p5foE-28F

Round up 3: Whittemore Peterson Institute (WPI) Chronic Fatigue Syndrome retrovirus XMRV in the media: http://wp.me/p5foE-280

Round up 2: Science 9 October 2009: Whittemore Peterson Institute (WPI) Chronic Fatigue Syndrome link to retrovirus: 08.10.09: http://wp.me/p5foE-27v

Round up 1: Whittemore Peterson Institute (WPI) Chronic Fatigue Syndrome link to retrovirus: 09.10.09: http://wp.me/p5foE-272

Next APPG on ME: Wednesday, 21 October 2009

All Parliamentary Party Group on ME   http://www.appgme.org.uk/index.html

The next meeting of the APPG on ME is scheduled for

 

1.30-3pm, Wednesday 21 October 2009

Committee Room 20, House of Commons

 

AGENDA

1. Welcome by the Chairman

2. Speaker (TBC. The Rt Hon Yvette Cooper MP, Secretary of State for Work and Pensions, has been invited.)

3. Minutes of the last meeting – available here

4. Matters arising

- APPG Inquiry into NHS Services

- Future Chairmanship

- Future Work of the APPG

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

5. Green Paper, Shaping the Future of Care Together

6. Welfare update

- Employment and Support Allowance

- Welfare Reform Bill

7. Any other business

8. Date of next meeting

Note: Legacy Paper

One of the items on the agenda is the drafting of a legacy paper, outlining areas of work for the APPG, in the event of a change of officials following the General Election. The Chair, Dr Des Turner, has already indicated his intention to stand down.

Members of the APPG and people with M.E. are invited to put forward three or four bullet point suggestions for the key issues and objectives for the APPG, following the General Election. Please e-mail your ideas to the Secretariat, who will produce a draft consensus document from the results. Submissions received by 5pm 19 October will be considered for inclusion in a draft legacy paper to be tabled 21 October. Later submissions should be received no later than 20 November, to be considered for inclusion in the second draft.

Issued on behalf of: Des Turner MP, 179 Preston Road, Brighton BN1 6AG. Tel: 01273-330610.

Email: turnerd@parliament.uk

By: Heather Walker, for the Secretariat (Action for M.E. and the ME Association)

Ed: All enquiries in connection with this meeting to APPG on ME Chair, Dr Des Turner, or to APPG on ME secretariat

 

Minutes of previous APPG on ME Meetings

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/memi389.htm

Under “BENEFITS RECEIVED BY GROUP FROM SOURCES OUTSIDE PARLIAMENT” AfME 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).”

AfME and the MEA have alternated the task of minute taking and 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.

So none of the five national registered membership ME patient organisations listed above are members of the APPG on ME but they attend APPG meetings, send their representives to meetings, and in the case of AfME and the MEA, provide the secretariat function.

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 sometimes listed as attendees in the minutes of meetings; 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.

A Guide to the Rules on All Party Groups can be downloaded here:

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

APPG on ME: Minutes and Transcript for 8 July 2009 meeting

All Party Parliamentary Group on ME meeting 8 July 2009

The last meeting of the APPG on ME took place on 8 July 2009.  The Minutes are published below, in both PDF format and as text.  The transcript of the entire meeting is posted in PDF format only.

Minutes APPG on ME 8 July 09

Transcript APPG on ME 8 July 09

 

Text of Minutes:

All Party Parliamentary Group on M.E.

Chair: Des Turner MP
Vice-Chairs: Andrew Stunell MP
Tony Wright MP
Secretary: Countess of Mar
Treasurer: David Amess MP

 

Minutes of the meeting of the All Party Parliamentary Group on M.E.
held at 1.30-3pm, Wednesday 8 July 2009
Committee Room 13, House of Commons

 

Present:

Parliamentarians
Dr Des Turner MP
Andrew Stunell MP
Countess of Mar
Peter Luff MP
Edward Davey MP

Secretariat
Sir Peter Spencer (Action for ME)
Heather Walker (Action for ME)
Kimberley Hogarth (Action for ME)
Charles Shepherd (MEA)

Organisations and individuals
Paul Davis (RiME)
Jane Colby (Tymes Trust)
Christine Harrison (BRAME)
Doris Jones (25% Group)
Joy Birdsey (K&SAME)
Jill Cooper (Warwickshire Network for ME)
Bill Kent (reMEmber)
Janice Kent (reMEmber)
Augustine Ryan
Michelle Goldberg

Apologies:

1. Welcome

The Chairman welcomed those present and apologised to those who may have been inconvenienced by a change of room. Two further apologies were made: that unfortunately there would be no speaker today, and that the chair would have to leave the meeting at 2 p.m. but that the Countess of Mar had kindly agreed to complete the meeting.

2. Annual General Meeting

Current officers were re-elected with the exception of Dr Ian Gibson, who had resigned as an MP. The Countess of Mar was elected to replace him. The elected Officers for 2009-2010 are therefore:

Chair: Dr Des Turner MP
Vice-Chairs: Andrew Stunell and Anthony Wright
Treasurer: David Amess
Secretary: Countess of Mar

The Chair pointed out that he is not standing at the next general election, so a new Chair will have to be found at that point.

3. Minutes of the last meeting

The Chair reminded the Group that the minutes are not intended as a verbatim record; they are business minutes. However he accepted that Paul Davis had said at the last meeting: “There is a road map that goes back to the CMO report, York review 1, and a certain school of psychiatry.” The reference to the CMO report had been omitted from page six of the transcript.

4. Matters arising

Jane Colby asked that it be noted that the BBC Politics Show, filmed in part during the last meeting, was transmitted in ME awareness week, and that everybody was very grateful to the APPG for allowing it to happen.

5. APPG Inquiry into NHS Services

The Chair reported that evidence sessions were due to start at 2pm the next day in Committee Room 19. The first session would hear from patients and patient organisations. He hoped that the next week’s session would include a Minister, the Chief Medical Officer and service providers. Many patients had submitted evidence. Questionnaires had been sent to all Primary Care Trusts. The aim was to produce a report which would act as a campaigning tool to improve services for people with ME.

During the discussion which followed, Dr Turner had to leave and the Countess of Mar took the chair. Some concerns were raised eg. that:

i. Existing services were not focused on neurological ME and over-emphasised the psychosocial model
ii. Some people would not respond to the survey for that reason
iii. Some panel members had made favourable comments about existing services in the past
iv. Evidence sessions clashed with key local meetings elsewhere, affecting attendance
v. People submitting evidence had not received confirmation of receipt due to the inquiry’s lack of administrative support
vi. Publicity for the inquiry had been limited and would not reach the majority who were not in touch with certain charities, support groups or services
vii. Some patients do not collate evidence
viii. How issues not covered by surveys, such as the replacement of consultants by new services in some areas, could be addressed.

Some issues could be raised via questions through the panel eg. support for severe cases.

It was noted that the decision had been taken by parliamentarians at the last meeting, to drive forward the inquiry quickly, because of the imminence of a general election.

The hope was for a report by the inquiry which would have sufficient credibility, evidence and parliamentary authority for consideration by the Health Select Committee.

6. Statement from WMMEG (West Midlands ME Groups) Consortium on ME/CFS – Education and Training in the NHS

i. Heather Walker apologised formally for tabling the wrong statement on their behalf at the last meeting.
ii. Jill Cooper asked that sufficient time to be allocated to discuss the key issues of appropriate NHS training at a future APPG meeting.
iii. Sir Peter Spencer responded to the WMMEG statement saying that he did not believe that NHS staff were being ‘trained’ to treat this illness as a psychological illness and that Action for M.E.’s involvement in the last NHS collaborative conference had resulted in delegates hearing Professor Stephen Holgate emphasise the importance of getting new research talent into the field, plus discussion on the need for properly derived patient reported outcome measures.
iv. Noting to the statement’s reference to Pathways to Work, the Countess of Mar reported that the Welfare Reform Bill was going through the House of Lords. She had been fighting hard to have ME and other fluctuating conditions recognised in their own right by the Grand Committee and not “lumped in” with mental illness.

The meeting acknowledged its appreciation of all the work that the Countess had done.

7. Future Work of the APPG

Ideas included:

i. Inviting Baroness Young, Care Quality Commission, to address the Group
ii. Maintaining focus on the DWP and Welfare to Work
iii. Follow-up on the presentation made by Jane Colby and Mary-Jane Willows about child protection problems, by asking the Inspector of Social Services to come to the APPG to listen to parents, consider how social services might be alerted to the possibility of M.E. in children and examine how parents could be informed of their rights eg. though a simple leaflet signposting information and organisations that could help them.

8. All Party Parliamentary Group Legacy Paper

As a General Election was due and the Chair had noted his intention to stand down, it was suggested that it might be useful to draw up a short summary of the APPG’s recent activities, outstanding concerns and objectives for consideration by the new Chair and any other new officials.

People with M.E. could be invited to put forward three or four bullet point suggestions for the key issues and objectives and to submit them to Heather Walker, Action for ME and Charles Shepherd. On behalf of the Secretariat, Action for M.E. would produce a draft consensus document from the results.

Action: Heather Walker to supply a copy of the Legacy Paper produced by the Cross Party Group on ME in the Scottish Parliament before their last General Election.

Click for Legacy Paper

9. Website

A website had been set up for the APPG at www.appgme.org.uk. Although the impetus for the site had come from the inquiry, the site would continue after the inquiry and would be the central focal point of information about meetings and activity.

10. Any Other Business

Michelle Goldberg raised the case of Kay Gilderdale 54 and the assisted suicide of her daughter, Lynn, after 17 years of M.E.

Michelle described the lack of support she herself had faced and highlighted problems experienced by another woman proven innocent after receiving an ASBO.

Christine Harrison reported on her campaign about pets in holiday accommodation. Currently, customers with allergies can not be guaranteed a holiday property in which a registered guide and/or support dog has not stayed. The Countess of Mar had kindly taken this up in the House of Lords, asking for a new clause to be added to the Disability Discrimination Act to say that people who rent out holiday accommodation are permitted/allowed to have a policy of no pets and no smoking to allow them to offer accommodation to guests who may have health conditions  and/or allergies that might be exacerbated by the presence of pets and smoke.

11. Date of Next Meeting

The chair advised the group that the next meeting would be in the Autumn

ME Association: Summary Board of Trustees meeting 7, 8 September 09

A meeting of the ME Association Board of Trustees was held on 7 and 8 September:

From the ME Association News page

Summary of MEA Board of Trustees meetings held on 7th and 8th September 2009

This is a summary of key points to emerge from two meetings of The ME Association Board of Trustees. These meetings took place at our Head Office in Buckingham on Monday afternoon, September 7th 2009 and on Tuesday morning, September 8th 2009. Informal discussions also took place on a number of issues on the Monday evening. Part of the Editorial team for the magazine discussed the content for the November issue on Tuesday afternoon.

Please note that this is a summary of the Board meetings – not the official minutes. The order of subjects below is not necessarily in the order that they were discussed.

PRESENT

Trustees:

Ewan Dale (ED) – Honorary Treasurer
Mark Douglas (MD)
Neil Riley (NR) – Chairman
Charles Shepherd (CS) – Honorary Medical Adviser
Barbara Stafford (BS) – Vice Chairman

Officials:

Gill Briody (GB) – Company Secretary
Tony Britton (TB) – Publicity Manager

Apologies:

Rick Osman (RO)

FINANCES

ED updated trustees on the current financial situation. Trustees then discussed the monthly accounts for the period up to the end of July 2009. Income for general funds continues to remain roughly in line with expenditure for the first seven months of the year – although the interest rate on our main reserve fund is protected from the full impact of the collapse in rates until November 2009. So we appear to have deferred the worst effects of the recession – at least for now. Trustees made some further minor changes to banking arrangements in order to maximise interest rates on the various bank balances.

RiME: Summary APPG on ME meeting 8 July 2008

Permission to Repost

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

Summary of APPG on ME Meeting 8/7/09

Meeting started 1.30pm

Politicians present: Des Turner MP, Andrew Stunell MP, Peter Luff MP; Lady Mar.

AGM

It was decided that Lady Mar would replace Ian Gibson as Secretary; otherwise the line-up stays the same:

Chair – Des Turner MP, Vice-Chairs – Tony Wright MP + Andrew Stunell MP, Treasurer – David Amess MP.

Inquiry

Paul Davis RiME raised concerns about objectivity, reminding people that the Gibson Report signed by Des Turner and Lady Mar says:

(A) ‘The £8.5m ring fenced by the DOH was used.. to set up 13 new CFS/ME treatment centres nationwide… The Group is extremely pleased with the advent of these centres and we hope they will be maintained and rolled out’ (5.1.) (B) that they were to his (Wessely’s) model (3.2)

In addition, you (Turner) said at the APPG meeting 2/7/08 you expected the inquiry would be taking evidence on progress ( – ed?) made since the CMO Report in January 2002.

Many ME patients, I said, would say that matters had regressed since the publication of the CMO Report 2002.

Were you not being precocious Dr Turner?

If I remember correctly, Turner looked at Lady Mar, seemed to laugh, and then mutter something I couldn’t hear.

On a wider note, Paul Davis mentioned the services in Sussex saying ‘you are patron of the Sussex Group Dr Turner, which supports the clinics in Sussex, yes?’ Turner nodded.

Davis – Patients accepted as referrals into the Sussex CFS/ME MDT need to fulfil the following criteria….

• The patient is willing to have a biopsychosocial and management assessment

(this in turn is based on the CNCC at Barts London, which says under Referral Criteria, ‘The patient is willing to have a biopsychosocial assessment’).

So, in addition to recognising ME to be a neurolgical illness under G93.3 (as APPG Chair) do you also deem it, in part at least, psychosocial? Is that not contradictory? (see Overview of meeting – below).

At this point, Dr Turner turned again to Lady Mar; they smiled; and if I caught what he muttered, said something about he couldn’t see a problem and isn’t there a psychosocial element to all illnesses?

(Gus Ryan/Ciaran Farrell notes say that Turner said that the Sussex Group were not keen on the Inquiry as they were psychosocially minded).

Janice Kent ReMember said something quietly to do with the Sussex Services which I couldn’t hear.

Jill Cooper West Midlands ME Groups Consortium pointed out that evidence sent to Inquiry wasn’t being acknowledged. I concurred.

Charles Shepherd MEA said there was a lack of publicity re. Inquiry.

2.00pm Turner left, followed by Stunell and Luff. Lady Mar chaired rest of meeting.

Peter Spencer AfME: We have to recognise that the decision taken at last meeting to drive ahead with timescales was taken in the knowledge that the Inquiry is not going to be as high-quality or as comprehensive as some had aspired to… The concern people have that the work may be of such poor quality as to be of no value is a real one… I hope that a report will come out which has sufficient credibility, a sufficient evidence base and sufficient authority from the parliamentarians to make it something that the Health Select Committee might want to take up, where there will be a much more thorough investigation. That is a realistic ambition.

Jill Cooper said an endocrinologist runs the ME clinic in Warwickshire (Nuneaton) and people are concerned that if there is no further funding the clinic may not continue to run.

Michelle Goldberg thought Dr William Weir should be involved in the process. Shepherd pointed out that he was in private practice now.

Statement form WMMEG (West Midlands ME Groups Consortium)

Jill Cooper: Can the Secretariat confirm that copies of the correct statement have been sent to attendees of the April meeting? Heather Walker AfME said they had.

Cooper: The key issues outlined of CCNRC Transparancy & Accountability remain unresolved. Whilst we would always advocate measured & constructive dialogue, without transcripts/DVD etc pwME & local groups cannot possibly judge whether the perceived “benefits” of being a “critical friend” as advocated by AfME & AYME, is actually supported by any tangible evidence that it is benefitting pwME and their families?

We would like sufficient time to be allocated to discuss this key issue of appropriate NHS education & training at a future APPG meeting: No point in people clamouring for more NHS resources if staff are being centrally “trained” to view ME/CFS as a psychosomatic illness.

Spencer said AfME would remain a critical partner with the NHS. Stephen Holgate MRC, he said, understood the frustration of ME patients; there were efforts to get new research talent into the field; talk of developing a tissue archive.

Lady Mar said her message about the problems with Pathways to Work is getting through.

Future of the APPG

Lady Mar said the future of the APPG is up in the air due to the impending General Election.

Future Work

Jane Colby TYMES: follow up was needed re. children being sectioned. Spencer, how? Lady Mar said get Inspector of Social Services involved.

Christine Harrison said the DWP Welfare to Work is still an issue

Legacy Paper

Spencer raised the idea of an APPG consensus document – outstanding concerns, obectives…

Shepherd said this was admirable but wanted input from MEA.

Meeting closed 2.36pm.

Disclaimer: The above is based largely on my scribbled notes. I cannot guarantee 100% accuracy. It is a summary, not a verbatim account.

Overview

This was the smallest gathering I have witnessed (probably to do with Inquiry oral sessions starting the next day – good planning eh?); and the shortest meeting.

At these meetings, there is not always the opportunity to pursue a line of enquiry. Sometimes the meeting moves on… Following my question to Dr Turner, ‘is that not contradictory’ (see above) – if I remember correctly (1) Janice Kent said a few words, then (2) I did get a point in that ‘treatment’ seems to be essentially psychosocial but not bio.

Those familiar with RiME will know what I am driving at. For the less initiated: Myalgic Encephalomyelitis (ME) is recognised by the World Health Organisation, eminent scientists, the APPG even, as a neurological illness. But the British Government has not spent a single penny investigating what is causing/perpetuating this dreadful neurological illness. Instead, it put bits of chicken-feed into psychosocial models of treatment. A cheap option, of course. Scandalous.

What is the APPG doing about it? Nothing, it would appear. The Gibson Report which Dr Turner + Lady Mar signed up to has been and gone. If the primary aim of the latter was to effect publicly funded biomedical ME Research, it failed; and there was no plan B. The APPG then, it would seem, has given up on that front.

If the APPG was genuinely about trying to help people with G93.3 ME would it not be lobbying vigorously for biomedical research? There would appear to be nothing to suggest it is. Instead, what is it doing? Holding an Inquiry into clinics which practice psychosocial models of ‘treatment’. Clincs which, throughout England, are being condemned by ME parties. Extremely disappointing, to say the least. Who, at this stage, would bet against it manufacturing a report favorable to the clinics set up following CMO Report? APPG officials have already demonstrated support for the clinics (see website, NHS Services Inquiry folder, RiME Comment May 27 file).

Re Inquiry: Thanks to those groups and individuals who sent copies of written evidence for RiME bank (over 50 so far). More on this soon. Those who contacted RiME saying they couldn’t participate on principle, we respect your decision. I would say the general consensus is that the APPG on ME is not working in the interests of ME patients; indeed, many would say it is working against them.

Paul Davis
rimexx@tiscali.co.uk

www.rime.me.uk

RSM “Medicine and me” event: Commentary by John Sayer

Royal Society of Medicine “Medicine and me” event on ME and CFS held Saturday, 18 July 2009

Commentary

John Sayer (Chair, M.E. Support-Norfolk)

25 July 2009

The half-day conference was organised jointly by the Royal Society of Medicine, the MEA, AfME, AYME, the 25% ME Group and TYMES Trust.

The promotional literature informed us that:

“‘Medicine and me’ conferences, initiated and developed by the Royal Society of Medicine, are specifically designed for patients. These meetings bring together patients, their families, carers, advocates, patient support groups, clinicians and researchers to discuss care and research issues in a particular condition…[and]…aim to provide a forum in which patients’ concerns about their illness are given top priority.”

Unfortunately, the pattern of the day – two presentations at a time followed by a five-minute slot for questions – did not really provide for much in the way of patient-led questions and/or discussion. It was, however, an opportunity to see what the various bodies involved had to say for themselves (and encouraging to hear Jane Colby of TYMES Trust underline in her welcome address that the title of the proceedings was “Medicine and me: ME *and* CFS”).

(This write-up is based on notes taken at the time by myself and Gus Ryan.)

Session 1 was chaired by Dr Charles Shepherd (MEA), who reminded us that there had been two parliamentary meetings [i.e. the All-Party Parliamentary Group on ME and the Countess of Mar's ForwardME Group] earlier in the week and that people still had a chance to submit written evidence to the APPGME’s NHS service provision inquiry.

The first presentation, “Diagnosis: the patient’s perspective”, was by Jez Harding (of Jez Harding Consulting Ltd), who had been diagnosed by Leslie Findlay as suffering from “classic M.E.” Jez described the term ‘CFS’ as “useless” and “a generic term”, pointing out that many illnesses had been lumped together. He considers the NICE Guideline to be “a fudge”. He had found his treatment – comprising CBT-style therapy, meditation and an anti-candida-type diet etc. helpful in completing a degree course. He now runs his own business, but has to take things as easy as possible (for example, avoiding the Tube). His GP won’t do anything that isn’t in the NICE Guideline, but *is* willing to refer him to a psychiatrist! He stressed the need for more biological research and wants more intellectual curiosity and cultural change in the approach to M.E.

Dr Abhijit Chaudhuri (of the Essex Centre for Neurosciences) spoke on “A rational, efficient and practical approach to diagnosis”. He said that ‘CFS’ represents a wide group of patients and the term does not help matters; that there should be earlier diagnosis, perhaps three months into illness onset (six weeks where children are concerned). He does not think the NICE Guideline has helped. In his view, post-exertional malaise, muscle cramps and *well preserved motivation and interest* (my emphasis) are key symptoms of M.E. and referral should be to a neurologist, since even psychiatrists admit that roughly 10% of ‘CFS’ sufferers have a neurological problem. He said that we need a national centre and funding for it (Romford being a treatment – not research – centre). His talk ended with a slide presentation of inflammation of the dorsal root ganglion, which he pointed out was “the gatekeeper of sensations”.

In the question slot Ciaran Farrell asked how we could change the NHS – to much applause from the audience. Dr Chaudhuri repeated that we need a national research centre.

“M.E. in children and adolescents” was presented by Shannen Dabson, a teenager whose story struck a particular chord with me as a teacher (prior to M.E.). She has had M.E. for six years, and now has very little trust in adults, having received virtually no respect for herself and her diagnosis. She found herself “written off” by her school, who didn’t send her work, didn’t mark the work she managed to do, didn’t send her the school newsletters or keep her informed of such things as the school photographs (which was the part that had me closest to tears, as I’d suffered the same treatment from my last employer: I will never forgive them for my absence from the school photograph of my form pupils; for both Shannen and me, it was like being airbrushed out of history). Shannen had had to make her own arrangements for taking exams, as her school refused to enter her on the grounds of a poor attendance record. To her admirable credit, she got six GCSEs anyway! I’m hoping to reproduce her talk for “MES-N” members, as it should be inspirational, especially for youngsters. She came up with what I personally consider to be a very practical, appropriate and *scientifically sound* slogan: “Work smarter, not harder!”

Hardip Begol (of the Department for Children, Schools and Families) spoke on “Addressing the educational impact of ME”, and said that Shannen’s situation is all too common from an educational point of view and that it was difficult to make teachers believe in ME/CFS. No personal disrespect to Mr Begol, but it struck me that what he had to say in his presentation did not have all that much immediate relevance, being, as one might expect, current government ‘fudge’. His comments were not actually specific to M.E., but here’s hoping that the conference gave him something to think about and take back to the DfCSF (though I’m not really holding my breath on that one).

In the question slot following these two talks Mary-Jane Willows (of AYME) said that the balance of power was with schools and Jane Colby pointed out that parents are too afraid to complain. (Personal note – no wonder, with the spectre of Social Services waiting in the wings, ready to pounce.)

Catriona Courtier (of the West London M.E. Self Help Group) spoke on “Treatment: the patient’s perspective”. She has had M.E. for twenty six years and her daughter is also ill. She reminded us that an AfME survey revealed that patients received very little proper treatment and that an MEA survey demonstrated that graded exercise therapy (GET) was the most dangerous form. She is ‘anti-NICE’. She said that staff at her local clinic *want* to help – but are misinformed.

Prof Anthony Pinching of the Peninsula Medical School, Plymouth, spoke on “Treatment – evidence-based and pragmatic approaches” and thinks that things are changing for the better. In his view, M.E. is a physical illness with psychological consequences and that people should work together and “not lob bricks at each other”. He said that the Cornwall service does make home visits. He advocates a ’symptom-control’ approach: which symptoms does a patient want most help with? I found him to be a bit vague and general, really, and he seemed to be saying that every individual needs different treatment (including psychological approaches), to be negotiated between patient and physician, and seemed to imply that success depended on the doctor-client relationship (which I personally find a bit too New-Agey: “permission to be ill and permission to have fun whilst you’re ill”). He did, however, say that there is a need for “building M.E. into the medical curriculum” (note – although it depends on exactly *what* is built in!). In response to a question about CBT from Dr Charles Shepherd, he indicated that such treatment should be ‘individualised’.

In the question slot Dr Chaudhuri expressed disagreement with Prof Pinching, saying that patients are *not* listened to and that the NICE Guideline is aimed at a *broad* group – these points being applauded by the audience. Prof Pinching responded that the NICE Guideline is not perfect, but should be used “to best effect”.

After a short (very short!) break, Sir Peter Spencer (Chief Executive Officer, AfME) chaired Session 2.

Dr Neil Abbott (ME Research UK) spoke on “Research: what do patients want and why isn’t it happening?” He suggested that the RSM host a biomedical conference on M.E. (Applause!) He said that the psychosocial model is predominant in the UK, although not quite so much in the US. He quoted Prof Simon Wessely with reference to psychosocial interventions: “certainly, those interventions are not the answer to CFS”. MERUK survey reveals that research on mitochondria, RBCs, immune cells, muscles, blood vessels, genes and brain are wanted; that this is not  “sexy” illness. ‘ME/CFS’ label is a problem: it is a process of elimination and that leads to a dustbin diagnosis. He is critical of the psychosocial approach, which is applicable to *all* illnesses (used to manage symptoms) and not specific to M.E. The real problem, in his view, is lack of funding.

Prof Stephen Holgate (University of Southampton) spoke on “ME: a research orphan for too long”. He said we need research because too little is known [sic] and said that the history of M.E. has dictated a mental health approach, it being perceived as having evolved from neurasthenia ['nervous debility']. He said, “It’s a system disorder” and that ‘omics’ should be used – i.e. genomics, proteomics and metabolomics. He referred to ‘ME/CFS’ as a “condition or conditions (25 or more)”; that the government won’t allow integrated research. He is putting together a workshop in November (the Medical Research Council Interdisciplinary Expert Group on M.E.), a systematic review deciding priorities, saying that a collaborative needs to be formed from charities [sic], the MRC and researchers, and that there is a need to ‘join up’ patients from clinics/centres. [Personal note: it all seemed to me a bit like reinventing the wheel and I have my misgivings about not only which 'charities' will be invited to participate but also the calibre of patients from the clinics/services.]

Dr David Misselbrook (Dean of the RSM) then invited questions to the panel of speakers. An elderly neuroscientist and his grandson tried to deliver a plug for the Lightning Process, the grandson claiming we had “wasted all this time talking when a cure has already been found” [sic], but Dan [from "M.E. Support-Norfolk"] pointed out that we hadn’t come all this way to hear a sales pitch for LP and Jane Colby expressed serious misgivings about success claims, citing an example of further harm caused to a patient; she also pointed out that no one can legally claim recompense if LP doesn’t cure a patient as it is not offered as a treatment, but a ‘training’.

Ciaran Farrell challenged Prof Holgate’s ‘history’ of M.E. but Prof Holgate said he had been misunderstood, that it wasn’t his own belief that M.E. was a form of neurasthenia and that he agreed with Ciaran, adding that he wanted to get rid of the terms “CFS” and “M.E.” [whatever that implies!].

In “Closing remarks”, Mary-Jane Willows said that there should be quick diagnosis, raising of awareness and no “one size-fits-all” approach. Doris Jones (of the 25% ME Group) read out a list of M.E. sufferers who have died and requested a minute’s silence in their memory, which was dutifully observed.

All in all, in my own opinion? A worthwhile day in order to find out what is going on in various quarters, but throughout the proceedings I did wonder who the ‘target audience’ was supposed to be, and for whose benefit this had all been arranged. Was it a ‘box-ticking’, ‘patient consultation’ exercise? The subtitle of the event, “Hearing the patient voice”, was a bit misleading, since we were mostly being talked at, not listened to; there certainly wasn’t enough time, as I said at the beginning, for much questioning or discussion. But maybe some of what was said will pay dividends. Fingers crossed.

John Sayer, Chair
M.E. Support-Norfolk

————————-

Ed Notes:

1] Terms of Reference for the MRC’s Interdisciplinary Expert Group on M.E. have yet to be agreed (FOI Act).

2] ME agenda is unable to enter into correspondence around the Lightning Process.

Invest in ME: Statement regarding Forward-ME

The Minutes of the last meeting of the Forward-ME group (a caucus group to the APPG on ME, convened and chaired by the Countess of Mar) held on Wednesday 8 July, at the House of Lords, can be read here on ME agenda or here on the website of Forward-ME.

Invest in ME, who are members of this group, have issued a statement in connection with Forward-ME and the last meeting of the group:

Invest in ME

[Forward-ME] Meeting 8th July 2009

IiME were not able to attend the meeting of this group on 8th July 2009 in London. As for every other meeting we submitted our comments to the Countess of Mar and all other members of this group in advance.

1 Attendance at Meetings and Visibility of Comments

We would like to return to our previous email (submitted in an email on 12th December 2008) where we stated the following -

We understand that, as we were unable to attend the last meeting, any decisions made at the meeting would not include our vote.

However, we see no reference in the minutes of either of the meetings to show that our views, as submitted in documentary form prior to each of the meetings, have been discussed or included in the discussions.

We would like to see that our comments have been entered into the discussions. Will the minutes reflect this?

We never received any response from our email of 23rd March.

2 GOSH medical meeting on ME/CFS in September to be discussed and the subject of Lightning Process

In the next meeting the subject of the GOSH at a day long medical meeting on ME/CFS in September is to be discussed and the subject of Lightning Process.

Mary-Jane from AYME has written “I share your concerns about this (LP) being included in the meeting”

We find this strange and hypocritical.

AYME have advertised LP for its members and freely allow discussion without seemingly making any critical comment on the lack of a research base, the numerous cases where people have been made worse and the fact that the practitioners of LP are generally not registered healthcare practitioners and take no responsibility for the results.

To state that there are concerns seems to us to be hypocrisy.

One should also remember that AYME and AfME are not in a position to criticise GOSH for including behavioural therapies/businesses as most of their recent joint conference in Milton Keynes included known advocates of the behavioural causality for ME and also included an insurance company representative.

3 Questions for Esther Crawley CNRCC Children’s Services

We have the following questions for Esther Crawley.

In your CV it states that you published research showing “children with CFS/ME don’t go to school because they are unwell not anxious”. However, isn’t it true that you believe there is a condition termed Pervasive Refusal Syndrome (PRS)?

If the answer to i) is yes then what proof do you have of this, what research is there to prove this really exists?

If the answer to i) is yes then how many children who were diagnosed with ME have you believed to have PRS?

What medical tests do you perform on patients who are suspected of having ME/have ME?

Do you test for acute and/or reactivated infections?

From the minutes of the meeting it appears none of our points were discussed. IiME were informed by CoM [Countess of Mar] that the questions to Esther Crawley were not asked as they were not appropriate to the discussion. The minutes of that meeting are available here

Ends

——————-

Please note that ME agenda is unable to enter into correspondence around the Lightning Process.  Please direct any enquiries regarding the content of the Minutes of Forward-ME meetings to the Chair of Forward-ME.  Please direct any enquiries regarding the content of Invest in ME’s statement to Invest in ME.

Documented pathology seen in ME/CFS that contra-indicates the use of GET: Margaret Williams 23 July 2009

Documented pathology seen in ME/CFS that contra-indicates the use of Graded Exercise Therapy

by Margaret Williams

23 July 2009

This document together with previous articles and commentaries by Margaret Williams can be found at ME Action UK

http://www.meactionuk.org.uk/Documented_pathology_seen_in_ME-CFS.htm

http://www.meactionuk.org.uk/Documented_pathology_seen_in_ME-CFS.pdf

The evidence-base of pathology that has been demonstrated in ME/CFS appears within a larger document that is already in the public domain, but is now provided as a 9 page separate item for ease of access.

The UK ME/CFS community may not yet be fully aware of the content of Dr Esther Crawley’s presentation on 8th July 2009 to the Countess of Mar’s “Forward-ME” group meeting held at the House of Lords. The Minutes of that meeting and Dr Crawley’s power-point presentation are accessible at http://www.forward-me.org.uk/8th%20July%202009.htm

Of particular note are the following points made by Dr Crawley:

· The CCRNC (CFS/ME Clinical and Research Network and Collaboration, of which she is Chair) is a “multidisciplinary organisation which exists to promote and support the delivery of evidenced based treatment for children, young people and adults with CFS/ME throughout the UK” whose objective is “To champion evidence-based approaches to the treatment of CFS/ME, such as those provided in the NICE guidelines” and which will use “clinical expertise to inform healthcare policy” and will “provide training for clinicians and researchers from all disciplines involved in the diagnosis and treatment of CFS/ME”.

· The CCRNC has an “Active training programme” and has “the ability to provide national training programmes”.

· The CCRNC will “invite no more than four people drawn from National UK CFS/ME organisations which explicitly support the aims and constitution of the organisation to sit on the Executive committee as either observers or members”.

· Its research strength is that it has the “Largest cohort in the world”.

· Its strengths are “working together — 600 clinicians and researchers, MRC, NIHR (National Institute for Health Research), Welcome (sic), patient and carer reps, charity membership”.

It is particularly notable that the Minutes record that when asked by Dr Charles Shepherd “whether, in the light of the widespread opposition to the NICE Guidelines, charities that were opposed to them would be invited to become members or associates of the CCRNC executive”, Dr Crawley’s response was: “In order to join the collaborative, charities would be expected to sign up to the evidence-based approach”.

The only possible interpretation of this is that patients’ charities are welcome to participate provided that they accept the behavioural modification interventions of CBT/GET recommended in the NICE Guideline (for which Dr Crawley was a member of the Guideline Development Group).

This would seem to be something akin to medical totalitarianism, especially given that Wessely School “evidence-base” upon which the NICE Guideline is predicated has been so stringently criticised by international ME/CFS experts.

See, for example:  http://www.meactionuk.org.uk/JR_Statements_-_extracts.htm

It is worth recalling that at the Royal Society of Medicine meeting on “Medicine and me: ME and CFS” held just three days later on 11th July 2009, MRC Professor of Clinical Immunopharmacology Stephen Holgate said that at the MRC, referees tend to reinforce the status quo and that he was not sure if his wish for an MRC inter-disciplinary group involving immunologists, neurologists and infectious diseases physicians would happen, which would seem to indicate that the psychiatrists’ stranglehold on MRC funding for biomedical research into ME/CFS is set to continue.

The Forward-ME Minutes also record that Dr Crawley said: “the reputation the CFS/ME charities had for infighting was not particularly helpful and prevented research and clinical involvement”.

Given that the “infighting” may have arisen because of the polarised views about the nature of ME/CFS, with the Government-funded charities (Action for ME and The Association of Young People with ME, to the latter of which Dr Crawley is Medical Advisor) supporting the NICE Guideline that is underpinned by flawed research, whilst other charities base their stance on the international evidence that shows the NICE Guideline to be seriously misinformed, it may be timely to look again at the following “evidence-base”.

Dr. Crawley stated that only those ME/CFS charities which agree to “sign up to the evidence based approach” are to be permitted to join her “collaborative”.

Given the volume of biomedical evidence that does not support Graded Exercise Therapy it would appear that in this instance signing up to an “evidence based approach” involves signing up to an approach that ignores most of the evidence.

Science is not furthered by a self-reinforcing “collaborative” determined to exclude dissenting voices; rather, a vigorous and honest dialectic is required. Medicine has no place for cabals and the lazy thinking they foster.

The “Forward-ME” Minutes record that Lady Mar said she hoped that Dr Crawley would “agree to continue to work with Forward-ME”; one can only wonder, sadly, just how far backwards her “Forward-ME” initiative will carry the UK ME/CFS community.

Evidence-based research showing pathology that contra-indicates the use of graded exercise in ME/CFS

There is an extensive literature from 1956 to date on the significant pathology that has been repeatedly demonstrated in ME/CFS, but not in “CFS/ME” or “chronic fatigue”; this can be accessed on the ME Research UK website at

http://www.meresearch.org.uk/information/researchdbase/index.html  and also at http://www.meactionuk.org.uk/Organic_evidence_for_Gibson.htm  

According to Professor Nancy Klimas, ME/CFS can be as severe as congestive heart failure and the most important symptom of all is post-exertional relapse (presentation at the ME Research UK International Conference held in Cambridge in May 2008).