Inaugural meeting of the APPG for ME: Wednesday 30th June

Inaugural meeting of the APPG for ME: Wednesday 30th June

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

Update: On Friday, 25 June, the ME Association announced a change of date.  Please note that the APPG on ME inaugural meeting is now scheduled for Wednesday, 7 July.

Change of date for APPG on ME reformation meeting – now July 7

“Unfortunately, the Westminster meeting to reform the All Party Parliamentary Group on ME has had to be moved forward a week – to Wednesday, July 7. On the bright side, this does mean that there is more time to encourage your own MP to attend.”

Action for M.E. and the ME Association have published the following information:

Help make sure the All-Party Parliamentary Group for ME reforms

Tuesday, 22 June 2010

The All Party Parliamentary Group for M.E. (Myalgic Encephalomyelitis) strives to support the improvement of health and social care of all people with M.E. in the UK. All APPGs were dissolved at the end of the last Parliament before the general election. Arrangements are being made to re-register this group as a matter of urgency.

An inaugural meeting of the APPG for ME will be held by David Amess MP on Wednesday 30th June, at Westminster.

The agenda will deal with appointment of office holders and members only and due to limitations of time and space it will not be possible to open the meeting to the public on this occasion. This is in order to ensure that the vital work required to re-register the APPG is carried out in a timely manner for the 13th July deadline.

It is vital that as many MPs as possible join the group as we need to identify at least 20 Parliamentarians to act as qualifying members. These must include at least ten who are not part of the government and of which at least six are members of the main opposition party i.e. Labour.

If you would like to help please send your local MP an email or letter asking them to join the APPG. There is a draft letter here to help get you started.

Open Word document here on ME Agenda: Example letter

or here on the ME Association’s website or here on Action for M.E.’s website

Dear __________________

As one of your constituents, I sincerely hope you will strongly support the interests of people with Myalgic Encephalomyelitis (M.E.), the long-term fluctuating illness also known as Chronic Fatigue Syndrome (CFS), which is sometimes diagnosed as Post Viral Fatigue Syndrome (PVFS).

M.E. affects 250,000 people in the UK and is recognised by the NHS and National Institute for Health and Clinical Excellence to be as disabling as multiple sclerosis, rheumatoid arthritis, congestive heart failure, and other chronic conditions yet it receives nowhere near the same degree of recognition or funding.

A very powerful way of demonstrating this to your constituents would be to join the All Party Parliamentary Group for M.E. and to help it to re-register in the new Parliament.

An inaugural election of officers at a meeting of the APPG for M.E. to be held by David Amess MP on Wednesday 30th June. This will not be a long affair but is a necessary preliminary to re-registration before the 13 July deadline.

I do hope that you will be able to attend but if this is not possible, could you please join the group anyway. We need to identify at least 20 Parliamentarians to act as “qualifying members” in order to remain on the approved list.

Yours sincerely

 

Ed: Note that this meeting is not a public meeting and the room number and time are not being publicised. If your MP expresses an interest in attending the inaugural meeting you may need to contact Action for ME’s Policy Officer, Tristana Rodriguez (tristana.rodriguez@afme.org.uk) and ask for details of the meeting to be forwarded directly to your MP.  Alternatively, refer your MP to David Amess, MP, outgoing APPG for ME Treasurer, who is convening this inaugural meeting.

Minutes of previous APPG for ME Meetings and Legacy document

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

APPG Legacy Paper 26.02.10

 

Clarification regarding membership of the APPG for 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 for ME.

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

In the case of Associate Parliamentary groups, applications for membership may be considered 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 for 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 for ME, and only Members of the House of Commons or Lords have voting rights at its meetings.

So the only members of the APPG for 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.”

At the time of publication, the House of Commons Session 2009-10, Register of All-Party Groups [As at 12 April 2010] can be accessed here:

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

INTRODUCTION

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

At the time of publication, the Registry entry for the outgoing APPG for ME group could be viewed here:

http://www.publications.parliament.uk/pa/cm/cmallparty/register/memi422.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).”

In the past, AfME and the MEA have alternated the task of minute taking and the preparation 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 have been opened up 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 members of the ME community and their carers, who can and do regularly attend and contribute to these meetings. This has not always been the case and the presence of members of the public is at the discretion of the APPG chair and committee.

So none of the following five national registered membership ME patient organisations are members of the APPG for ME but they attend APPG meetings, send their representives to meetings, and in the case of AfME and the MEA, have provide the secretariat function: 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 : a research organisation and 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.

The names of ME patients and carers attending meetings are recorded in the minutes of meetings and their contributions to these meetings are minuted.

For the past couple of meetings, an official verbatim transcript has been prepared from an audio recording of the procedings and this has been published alongside briefer minutes. This parliamentary service has been funded by Action for M.E. and the ME Association.

It is not known whether transcripts will continue to be provided for the meetings of any new group that may be convened. It is unconfirmed whether minutes will be published for the inaugural meeting or whether representatives of the outgoing group’s secretariat will be present.

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

or opened here on ME agenda

APPG Groups Rules

RiME: Notice and Letters 11/5/10

Campaigning for Research into ME (RiME):  Notice and Letters 11/5/10

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

www.rime.me.uk

From Paul Davies

11 May 2010

Campaigning for Research into ME (RiME)

Hi,

Thanks to those who have sent good wishes re. my bout of shingles. Slow progress…

Trying to catch up on correspondence… Because of increased and increasing support for RiME it gets increasingly difficult to reply to everthing. If you have sent a letter/email recently which you feel warrants a reply, please try again.

Good Wishes, Paul rimexx@tiscali.co.uk  www.rime.me.uk

Selected Letters Oct. 2009 – April 2010

Views expressed in the letters do not necessarily reflect those of RiME.

Ref: 799 Grampian

Thank you for sending me the latest newsletter. As always, the newsletter is realistic with regard to all aspects of the ME situation. When will this change in the UK?

The leading ME charities seem to go round in never ending circles achieving very little for neurological ME patients. It is as though they are reluctant to admit that they are representing both G93.3 patients and F.48 patients at the same time. Is this because they don’t want to choose between the two groups? Is this why they still back the ludicrous CFS clinics dolling out CBT/GET? Who profits from this approach?

Worryingly these are the groups who supposedly “represent” neurological ME patients in the UK. They should truthfully state which group of patients they represent. Or perhaps it is time for a new ME Group which truly represents neurological ME patients. Perhaps an alliance between some of the already existing smaller pro-neurological ME groups? I like the idea of one “UK ME Society” representing G93.3 patients only. Sounds quite a good name too because it incorporates all sufferers the length and breadth of the UK.*

It is incredible that following the latest XMRV research results the MEA is not recommending that research scientists should adhere to the stricter Canadian Clinical Guidelines for research patient selection. This says it all. Why does the MEA wish to leave the research door wide open to include F48.8 patients?** Do they really want both G93.3 and F48.8 patients to continue to be lumped together, thus watering down research results? Don’t they want to find a diagnostic test, followed by appropriate treatment? Or do they want ME patients to remain in the Chronic Fatigue/F48.8 mire for all time? If this is the case then a new UK ME Group is sorely needed…

Ref: 804 London

Thank you for the last Newsletter. Excellent. Yes, how we do get rid of AfME + MEA? Perhaps it’s something that needs to be discussed on the internet. Would you consider putting this letter on message boards? The point is: If the vast majority don’t feel the above are acting in their interests (indeed, many feel they are acting against them in that they are not really about G93.3 ME) then let’s robustly discuss that knotty problem ‘how do we get rid of them’?

1. It’s excellent to see their respective memberships nose-diving but the trouble is, will they not be propped up by Government funding? Could we petition the Health Department asking that Section 64 funding be withdrawn?

2. I find it difficult to think of anyone now who genuinely supports them. I know a few who still get their awful rags because ‘they want to know what’s going on’. Is there a way that more people can access their information but without subscribing ie share-swaps or info. being circulated via ‘net.

3. Challenge those groups who still support them – it never ceases to annoy me when I see a Local Newsletter which says at back ‘useful addresses – AfME, MEA… ‘ Too often the wrong people get to run local groups – there seems to be so many troglodytes and blissninnies who feebly accept the status quo; sadly, too few challenge what they do re. the larger picture.

4. The obvious way to get rid of the above is for us to start a new national ME Society*. But without the backing of a wealthy philanthropist, it won’t be easy… If the philanthropist doesn’t materialise, could one have a process where ME patients pledged money as they did re. the Judicial Review. Tricky. Would people be prepared to do it without knowing exactly what the end product would be?

Food for thought…

Ref: 806 Lincs

I wish I had the energy to write a long post about my NHS experience however to summarize:

I had similar experiences as people here.
Each session of the NHS CFS group was 2 hours long, this was at least 1hr too long. It made it a 3-4hr event.
They made us sit on school class room style chair, agony.
If/when you left they blamed you for not cooperating so it didn’t go into any statistics I went to 6 out of 8 sessions. When I left half had gone already. The ones that stayed seemed to have other conditions.
It sent me into a bad relapse.
It was even suggested I leave my wife and children to avoid stress.
It was horrendous, I didn’t get to see a consultant or even a doctor.
I had my initial assessment with a nurse and the sessions were run by an OT.
No tests or specialist help just relaxation and exercises to stop my negative thinking.

Bad bad bad…

Ref: 810 Glamorgan

APPG Legacy Document… This is a deeply depressing document.

Can we get anywhere while the Group pretends its remit is ME, but acts as if it’s CFS?

Perhaps the answer is to split it into two separate Groups. Those who favour the psychiatric clinics to call themselves APPG on CFS. Those who commit themselves only to ICD-10 G93.3 ME to use the existing name, the Canadian Consensus Criteria &/or the Nightingale definition of ME, and pursue biomedical research and treatments specifically for ME and provision by the DWP appropriate to a disabling neuroimmune disease?

You deserve several medals for plugging away at this so faithfully…

Ref: 813 Norfolk

… Just want to register at this point my ongoing gratitude and continuing support for your efforts to make us heard!
and also to applaud those efforts of the other-equally beleaguered-ME sufferers at these meetings – please don’t let them silence any of you – I only wish I was well enough to attend myself; alas have now been housebound for months
But you need to continue to speak up because you are just about the only people there who are actually stating the facts and representing the true needs of ME patients. Without your voices we will all be gagged.

Lady Mar should step down in my opinion, since she seems completely unable to control her temper it follows that she is hardly a suitable person to act as Chair…

Ref: 816 Yorks

… I must congratulate you. When you first notified me about the Inquiry, the common question was “will it try to concoct a favourable report and publish it in the run up to the next election?”

I think your actions have helped ensure that did not happen. It sounds quite awful what happened to you at the last meeting. The current APPG does not appear to be fit for purpose. Let’s hope after the election, the situation will improve.

A big “THANK YOU” for your sterling efforts, which hopefully is a step towards stopping the abuse of patients, given the unsupported diagnosis of ME/CFS.

I discovered the report on 10th January; it was unacceptable the way it was presented to the APPG. It was also very discourteous that Dr Turner did not even acknowledge receipt of papers people sent in. We were not told when the hearings took place. We were not told the Interim Report had been issued….

Ref: 822 Birmingham to Parliamentary Commissioner

… I understand that you have been contacted recently by ME sufferers who attended the APPG meeting for ME held on the 2nd of December last year. I wish to add my support to their complaint.

I think it may help if I give you some background information that has given rise to unhappiness that is surfacing at meetings. Currently there is tension amongst the ME community due to the fact that they feel their illness is not being taken seriously at Westminster. Part of the blame for this stems from what sufferers see as a failure of ME charities and their supporters to adequately represent them. Because of this, some feel they have no choice but to struggle to meetings in the hopes of trying to educate politicians as to how dire their situation is. People such as I who have been ill for twenty- two years cannot make the trip to London and are extremely grateful to sufferers who do make an effort; aware that many do so at a cost to their own health. Nevertheless and regardless of their efforts, politicians still only see ME charities as being representative of all sufferers and show favourable bias towards them. Whilst recognising that meetings only have a limited time in which to conduct business it needs to be borne in mind that the APPG for ME has been in existence for just over a decade, yet not one success can be pointed at to justify its cost to the taxpayer. The equivalent of a business plan has never been put forward. Had politicians developed one it would have shown a real commitment on their part, and gone some way to show to the public what expectations they should have, and what can reasonably be achieved by a group having APPG status. As a result dissatisfaction with the APPG group has steadily grown.

At the moment it is far too easy for group politicians to portray the public as being awkward or aggressive when the group’s lack of progress is being brought to their attention, but unfortunately that is what is now happening. In my view politicians appear to feel that just showing a willingness to be involved with ME, is in itself enough for nothing other than gratitude to be shown towards them. Whilst I and many others are grateful if a politician shows an interest, there seems little point if nothing of any substance ever materialises. As you know yourself living in a democracy allows people, if unhappy, every right to say so without fear. This ought to be obvious to the politicians involved. They should also be aware that they are displaying poor judgment when they show not only an unwillingness to listen, but believe it acceptable conduct to flounce out of meetings. Their actions only feed into underlying concerns the public in general have regarding the standard of politics in the UK. Concerns that are understandable given what is being currently being said in the media.

I am also worried that – as an election is on the horizon – there may have been some manipulation of events at the last few APPG meetings, in order to try to justify the current APPG not being reformed when a new Parliament reconvenes. This would leave only ForwardME as the only ME lobby group within Westminster; a group in which it has been made quite clear to the ME community that only people acceptable to it are allowed to attend…

(Ed. copies to RiME of letters sent to Parliamentary Commissioner go into double figures).

Ref: 830 Kent

Thank you for the summary of the APPG meeting, and for standing up for ME patients. I hope it didn’t take too much of your energy, it’s appalling that they respond in the way they do. R says don’t let the xs get you down….

Thank you again for your email. Surely there will be a breakthrough in someone’s research somewhere in the world and the politicos and Wesselyites will have to eat mounds of humble pie. Won’t that be bliss!

Ref: 832 Yorks to Daily Telegraph

A letter appeared Feb. 6 entitled ‘Breaking the ME Enigma’, which says in para. 4 ‘it is time the nation started taking ME seriously’. I wish to comment on the said letter by pointing out the following:

The rank and file have been trying to get the nation to do this since 1997… Often it has been done without any support from the main groups who seem content to let things ride referring to any such attempt as counter productive, and sitting on the side lines… Some representatives from these groups have even signed the letter.

Any progress in the nation becoming aware of ME of which there are many enlightened citizens has been done by the rank and file going among them, it is a sad fact that the establishment is not as enlightened, a point which the general public have often commented on at fundraising and awareness events.

Other signatories are members of the APPG on ME, which when it was formed as a result of action taken again by the rank and file between 1997 and 1998. In eleven years the APPG has not once championed the cause of ME biomedical research, but have debated other issues and when complaints have been made at meetings have threatened to evict anyone who disagrees, as a result of this dictatorial behaviour they have been reported to the Parliamentary Commissioners for Standards….

Yes ME has needed the enigma to have been broken and resolved but this should have been done long ago, by those whom we looked to for leadership but were sadly let down…

Ref: 835 Dorset

I hope you don’t mind me emailing you but x y posted your message about the latest APPG debacle on Facebook. Firstly, thank you for all you do. I am in agreement with your comments regarding certain members of the APPG. They seem to be conducting highly irrelevant investigations into what amount to highly irrelevant NHS services. I have pointed this out to many people including CS of the MEA but there seems to be a reluctance to admit any fault….

Anyway, I understand that Des Turner is stepping down as chairperson so it could be an opportunity for some new blood in the group. My MP, Annette Brooke (Lib Dem) might be somebody to approach about this. She has shown a lot of concern towards me and my worries about the lack of research into ME. You may have seen the adjournment debate she led in parliament a few weeks ago. I was partially responsible for this although I wasn’t entirely happy with the early part of the speech (I wrote the second half!) as it was rather too complementary about our local ME clinic/support group which quite frankly are a disgrace….

Ref: 837 London

… The Internet is a powerful tool which can work to ME patients advantage, especially in terms of exposing the national ME Charities’ errant ways. Running Internet Services is not an easy job, and there can be a fine line between freedom of speech and moderation. However, if a person makes accusations which are inaccurate and unfair, then one wonders if a line has been crossed. Critical comments have been made recently about persons attending the Dec. 2 2009 APPG meeting, with words such as ‘rude’, ‘aggressive’ and ‘disruptive’ being used.

I was there that day. For the record: No ME patient acted rudely. No ME patient acted aggressively. The only rude and aggressive behaviour came from politicians. Consequently, several have complained to the Parliamentary Commissioner.

Distorted and exaggerated accounts are too readily accepted by a few Internet users, and they need to be more careful what they write.

Disruption? That is a moot point. If there was, fine with me. The way the APPG Inquiry into ME/CFS Services was set up certainly needed challenging (with only AfME and MEA being consulted re. writing of Report). Moreover, if ME patients hadn’t spoken up at the start of the meeting, I dare say they wouldn’t have been given the chance.

The whole thing stinks. Talking to friends around England, I don’t get any good reports on the clinics set up following the CMO Report; indeed, the opposite – more GET, CBT… Yet the APPG, in conjunction with AfME and MEA, has published a Report which does not accurately reflect how ME patients feel…

‘Relax, we’re winning, XMRV… ‘ I don’t subscribe to that view; it smacks of complacency, if not Micawberism. The Government in cahoots with ‘Wesselyites’ will hold out for as long as they can. Why? Money, of course. If replicated test results from ME patients show anomalies, we still have a mountain to climb.

Note the evolution of the Wesselyite argument: First, didn’t they say ME doesn’t exist? Now, are they not saying that there is a biological element but it is still largely psychosocial; treat the latter, and ME patients will improve/recover? Their studies (not about strictly defined ME) provide the Government with a cheap option which I think they will cling to for as long as possible.

So, we must challenge clinics set up following the CMO Report upon the ‘Wessely model’. Congratulations to those who had the courage to speak out on Dec. 2; they deserve our loyalty and support…

Ref: 842 Lancs

Dear Mr Turner

You are to be commended for your courage in taking the chair at any meeting concerning ME. Obviously you must have been aware previously that there is a sizeable bone of contention between certain factions of those people who are focused on progressing the interests of ME sufferers. That such a rift exists, reflects the wide variations in the severity of the condition (a variety mentioned by the Minister himself) and is a considerable factor behind such bitter disagreement.

From the minutes of the last APPG meeting it seems patently clear to me that you (and the Countess) do not acknowledge a similar act of courage to your own from ME sufferer Mr Paul Davis and some of his supporters given the severity of the condition encountered by these people. Merely attending the meeting is in itself an ordeal which prevents others with similar problems from playing any part in fighting their corner. Mr. Davis’s efforts are truly Herculean and the Chair, whatever the difficulties, must recognise this and, on all occasions, give respect, at least, to his views. Mr Davis and his supporters are fighting for their very lives and this cannot be said, with the best will in the world, in respect of the “professionals” who represent the large charities. Mr Davis does indeed carry the hopes of many sufferers of severe ME who, however, are effectively disenfranchised by the fact that government and the APPG meetings both operate from a far corner of the UK so that, given their debilitating illness, they find the time and distance to be problems which they are completely unable to endure. Let this never be forgotten.

Quite frankly, your treatment of Mr Davis was nothing less than appalling and revealed a complete lack of skill for anyone acting as Chair. You openly admit, as reported in the minutes, that AFME and MEA were the only groups consulted, a fact which needed to be brought to attention at the outset. Your “reason” for carrying out this act of impartiality being “because they are the only people who assist with the running of the Group” (APPG) is completely outrageous and does not bear thinking about. (I trust that this is not a usual Parliamentary practice). Given the widely known polarised views on ME, this impartiality is a blatant slap in the face for Mr Davis and his supporters in RIME.

To the injury supplied to Mr Davis above you then had the audacity to add insult. Your recorded stab at Mr Davis “I know you feel that you represent MILLIONS of patients” was unacceptably contemptuous. (It is, however, pertinent to state what the Minister himself said, that the number of ME sufferers is not actually verifiable, which is a comment in itself about the progress made with M.E.). To cap it all, the minutes record that, in repost to a supporter of Mr Davis that “important points” had been made by Mr Davis and his colleagues, you retorted “I have yet to hear one.” Bias, Mr Chairman? You supply any synonym you like….

Ref: 844 Kent

… I’m so sorry to hear that you’ve got shingles; really nasty. I hope it soon abates. It was a great pity that you had to miss the latest APPG meeting; I’ve been trying to get there for the past year or so, but it’s still beyond me at the moment.

Was really glad, though, to see – on ME Agenda – Chris Ellis’s excellent letter condemning the treatment you were afforded at the previous meeting, behaviour which was truly appalling and at the same time cutting to the chase on what the APPG should really be about. Will they take notice I wonder…

Not a lot of hope out there for us at the moment with the conflicting XMRV test results floating about. Have just finished reading Hillary Johnson’s Osler’s Web… fascinating and illuminating, bringing home how serendipitously ME (or CFS as it was in the States) became ‘associated’ with psychological problems, and in such a cynical way.

Have just read the APPG Governance procedures, which seem to indicate that the Chairman is always right…

Please don’t respond, you’ll have enough on your plate coping with yet another painful and debilitating symptom; just wanted to get in touch to give you my support. Will try to take some action on the Report.

Ref: 846 Surrey

To RiME,

Letter to Lady Mar… Don’t let the Blissninnies and PollyAnnas get you down.

Dear Lady Mar,

I have read the full transcript of this meeting (APPG on ME Dec. 2 2009).

Myself and others associated with ME congratulate Paul Davis RiME on the points he made at the beginning of the meeting. He was quite right to ask who was consulted regarding the writing of the Report on ME/CFS Service Provision, and to raise concerns in that respect.

These were valid and legitimate points.

I don’t know anyone, incidentally, who is attending the clinics set up following the CMO Report 2002.

Can I ask, therefore, why you asked for him to be evicted? …

Ref: 851 Leader of Manchester Group

Charles. Yes it is a funny old world. The whole scenario reminds me of the fable of the Emperor’s new clothes. A case of collective denial. I don’t know where you’re getting your feedback from maybe you could share it with us.

There is not one single children’s NHS clinic that doesn’t treat ME as a psychosocial illness. The APPG report doesn’t see this as a problem. It ‘accidentally’ omits the advice of the TYMES Trust and repeatedly quotes Esther Crawley, the staunch Wessely School specialist. If Des Turner gets his wish and CFS/ME children’s clinics are funded throughout the UK we will almost definitely see more of the same. The number of children being forced into harmful/abusive psychosocial treatments will dramatically increase. Why on earth would people with ME want to thank Des Turner for that?

The MEA’s repeated excuse of supposed ‘feedback’ to try and justify their atrocious position on the clinics is beginning to grate.

The MEA justify their backing of the clinic (which almost entirely consist of psychosocial treatments) by quoting feedback of those who most probably have psychological chronic fatigue.

*Ed: The ME Association has already registered “The ME Society” with the Charity Commission as an alternative name to its operating name.

**Ed: If the author is referring to ICD-10 Neurasthenia, the ICD-10 code is F48.0, not F48.8.

RiME Notice: 15/03/10

RiME Notice: 15/03/10

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

RiME Campaigning for Research into Myalgic Encephalomyelitis  www.rime.me.uk 

RiME Notice

I wanted to let supporters know that I got Shingles 3-4 weeks ago. Unpleasant and I have to rest.

Frustrating… Much going on and much to do.

I had intended to attend the final meeting of the APPG on ME March 10 and make some points about the deeply flawed draft Report on the Inquiry into NHS Service Provision for ME/CFS (the one handed out at the previous meeting), notably:

1. What is this Inquiry really about? The description of ‘ME/CFS’ on Page 2 of the draft Report mentioned above is not about the neurological illness described by ICD 10 G93.3 or the Canadian Criteria.

2. That significant evidence submitted to the Inquiry (over 50 copies were sent to RiME) is not accurately reflected in the draft Report. Time and again ME parties say (A) the clinics set up following the CMO Report are not about the neurological illness Myalgic Encephalomyelitis (B) why is the APPG on ME (it recognises ICD G93.3 in its Code of Conduct) investigating these clinics?

That it is not reinforces the view that the APPG on ME is not for ME patients but about them; and that it is primarily about promoting Government policy (not about G93.3 ME).

I haven’t yet been able to read the Report handed out on March 10 but if it is anything like the last it is totally unacceptable and will need challenging.

If you’re not happy with it, let the politicians know – Dr Des Turner MP, Lady Mar, your own MP… (please send us copies).

If there are a few who still think the likes of Dr Turner and Lady Mar are, overall, helping ME patients – two words: Prove it.

Good Wishes, Paul

Paul Davis

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

Former ME Association Chair, Chris Ellis, writes to Chair, APPG on ME

Former ME Association Chair, Chris Ellis, writes to Chair, APPG on ME

Shortlink: http://wp.me/p5foE-2Q3

Mr Ellis, who resigned as Chair and Trustee of the ME Association Board of Trustees in February 2004, wrote to Dr Des Turner, MP, a few weeks ago, after reading the Minutes of the December meeting of the All Party Parliamentary Group on ME.

Mr Ellis has kindly given permission for his letter to be published on ME agenda and Co-Cure mailing list and is to be commended for speaking out so passionately in support of those members of the ME community who struggle to attend these meetings and who represent the interests of those unable to participate.

Des Turner MP
APPG ON CFS/ME
House of Commons
London

08 February 2010

Dear Mr Turner

You are to be commended for your courage in taking the chair at any meeting concerning ME. Obviously you must have been aware previously that there is a sizeable bone of contention between certain factions of those people who are focused on progressing the interests of M.E. sufferers. That such a rift exists, reflects the wide variations in the severity of the condition (a variety mentioned by the Minister himself) and is a considerable factor behind such bitter disagreement.

From the minutes of the last APPG meeting it seems patently clear to me that you (and the Countess) do not acknowledge a similar act of courage to your own from ME sufferer Mr Paul Davis and some of his supporters given the severity of the condition encountered by these people. Merely attending the meeting is in itself an ordeal which prevents others with similar problems from playing any part in fighting their corner. Mr. Davis’s efforts are truly Herculean and the Chair, whatever the difficulties, must recognise this and, on all occasions, give respect, at least, to his views. Mr Davis and his supporters are fighting for their very lives and this cannot be said, with the best will in the world, in respect of the “professionals” who represent the large charities. Mr Davis does indeed carry the hopes of many sufferers of severe ME who, however, are effectively disenfranchised by the fact that government and the APPG meetings both operate from a far corner of the UK so that, given their debilitating illness, they find the time and distance to be problems which they are completely unable to endure. Let this never be forgotten.

Quite frankly, your treatment of Mr Davis was nothing less than appalling and revealed a complete lack of skill for anyone acting as Chair. You openly admit, as reported in the minutes, that AFME and MEA were the only groups consulted, a fact which needed to be brought to attention at the outset. Your “reason” for carrying out this act of impartiality being “because they are the only people who assist with the running of the Group” (APPG) is completely outrageous and does not bear thinking about. (I trust that this is not a usual Parliamentary practice). Given the widely known polarised views on M.E., this impartiality is a blatant slap in the face for Mr Davis and his supporters in RIME.

To the injury supplied to Mr Davis above you then had the audacity to add insult. Your recorded stab at Mr Davis “I know you feel that you represent MILLIONS of patients” was unacceptably contemptuous. (It is, however, pertinent to state what the Minister himself said, that the number of M.E. sufferers is not actually verifiable, which is a comment in itself about the progress made with M.E.). To cap it all, the minutes record that, in repost to a supporter of Mr Davis that “important points” had been made by Mr Davis and his colleagues, you retorted “I have yet to hear one.” Bias, Mr Chairman? You supply any synonym you like.

– 2 –

Turning now to the APPG report itself, the hotly disputed subject of CBT and GET treatments receives a bias which is unacceptable to the RIME faction I would think The minutes themselves show that the Minister himself has some reservations when he says “concerns have been expressed about the acceptability, efficiency and safety of several treatments including CBT and GET”. The report finds that these objections “might relate to the fact that they are not being delivered by properly trained healthcare workers”. Indeed a plausible concern and yet the obvious possibility that they just do not work and are dangerous when applied to M.E. sufferers (as distinct from the CFS hotchpotch) is not expressed. (Could it possibly be that I might be able to use the Psychiatric terminology that some people are “in denial” about such a hypothesis?). I would like to have been better informed about the submissions behind the report’s words “in part due to the fixed attitudes about causation by some health professionals”.

I would like to think that a more sympathetic manner will prevail towards Mr Davis and RIME in the future. I do believe that it is quite possible to remove most of the rancour if one simple action is taken.

And now I must offer you MY OWN APOLOGIES for the vehemence of the above words addressed to yourself. As the father of a young woman who, in her early twenties, contracted ME, who has continued to suffer a variety of severe symptoms (chronic “fatigue” indeed) for around 15 or so years AND has had to bear the “yuppie flue” stigma and the outrageous statements made by certain so-called eminent psychiatrists in the early years, I ask for your forgiveness. Yours is not an easy job, indeed.

Let us rid ourselves of much of the disputation at APPG meetings; let us achieve a more unified approach by ME organizations; just one simple and, what is more, virtually costless manoeuvre might well do the trick. Let us take the SPECIFIC application of the psychiatric initiatives out of the SPECIFIC ME equation. Let us simply re–name the local area clinics and associated baggage, which have hitherto been designated to ME, and let the new name reflect a comprehensive application of psychiatric treatments to any number of appropriate medical conditions. Given that it must be assumed that the medical profession approve of the likes of CBT and GET and must also be satisfied of the cost effectiveness of the present setup, surely it cannot be that such treatments would not benefit the recovery in a wide variety of illnesses.

Once removed from the equation SPECIFICALLY currently applied to ME, the hotly disputed psychiatric contribution to the subject would no longer be pivotal in causing such havoc in the realms of ME politics. You and the APPG would have a far quieter life, the Minister would have a much smaller angry postbag, the medical establishment would not I feel be terribly aroused and the cost would be minimal. Any mileage in this?

Yours sincerely

C R ELLIS

Related material

RiME response to APPG on ME Legacy Paper

APPG Legacy Paper 26.02.10

Minutes and Verbatim Transcript meeting of the APPG on ME held 2 December 2009

RiME Letter to Daily Telegraph 10/2/10

RiME Letter to Daily Telegraph 10/2/10

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

Campaigning for Research into ME (RiME)

RiME is sending the letter below to the Daily Telegraph.

If you also want to write – letters to dtletters@telegraph.co.uk

Paul Davis

ME: Biomedical Research: Appearances can be Deceptive

Sir,

A letter appeared Feb. 6 entitled ‘Breaking the ME Enigma’. In the final paragraph it says, ‘Above all, we should fund biomedical research to resolve the enigma of the underlying pathology of this illness… ‘

This is all very well, but please note that three of the signatories are officers of the All Party Parliamentary Group on ME (APPG), with two others – the ME Association and Action for ME providing the secretariat. Over the eleven years the APPG has existed, the British Government has not put a single penny into ME biomedical research, preferring instead to fund psychological models of treatment, notably Cognitive Behavioural Therapy.

The APPG has to date devised no effective strategy for addressing that deficiency.

ME patients are frustrated in that the APPG does not adhere to accurate definitions of the neurological illness Myalgic Encephalomyelitis. Disappointingly, it supports Government Reports which are more to do with poorly defined fatigue and which recommend cheap, inappropriate options (psychological models of treatment) as far as ME is concerned.

The pivotal issue of biomedical research rarely appears on the agenda at APPG meetings; indeed, recent meetings have been largely about the clinics set up following the CMO Report on ‘CFS/ME’ 2002; clinics which offer the type of treatment described above and which ME patients throughout England condemn as inappropriate, if not irrelevant, to their plight.

RiME wrote to all 646 MPs in 2008 asking whether or not they think the British Government should be funding research into the underlying physical causes and disease process of ME. Only 66 have so far ticked the ‘Yes’ box. Many members of the APPG, including its Chair, have not even replied.

Paul Davis Campaigning for Research into ME (RiME)  www.rime.me.uk   rimexx@tiscali.co.uk

‘Breaking the ME enigma’ Daily Telegraph, 6 February 2010

SIR –

The death of Lynn Gilderdale and the humane verdict in the trial of her mother brought home to many people for the first time what a devastating illness myalgic encephalomyelitis (ME) can be.

Many of the estimated quarter of a million people with ME in Britain experience not only extreme pain and disability, but also incomprehension, ignorance, lack of sympathy and at times outright hostility, not only from the public but also from professionals responsible for their care.

Such lack of understanding even extends to blaming parents for the severity of their child’s illness.

It is time the nation began to take ME seriously. Provision of adequate clinical and other services by properly informed and sympathetic professionals is currently subject to a postcode lottery. Such provision should avoid inappropriate treatments, and range from support for home tuition for school-age children to respite care for the severely affected.

Above all, we should fund biomedical research to resolve the enigma of the underlying pathology of this illness. We should build on recent scientific advances to develop effective treatments, so that no one in future need experience the pain, isolation and despair that were Lynn Gilderdale’s fate.

Countess of Mar Secretary, All Party Parliamentary Group on ME

Dr Neil Abbot Operations Director, ME Research UK

Jane Colby Executive Director, The Young ME Sufferers Trust

Anne Faulkner Hon Director, CFS Research Foundation

Tanya Harrison Chairman, BRAME

Malcolm Hooper Emeritus Professor of Medicinal Chemistry, University of Sunderland

Andy Kerr MSP

Dr Jonathan Kerr Consultant Senior Lecturer, St George’s, University of London

Simon Lawrence Chairman, 25 per cent ME Group

Kathleen McCall Chairman, Invest in ME

Dr Luis Nacul Consultant in Public Health, London School of Hygiene and Tropical Medicine

Professor Derek Pheby National ME/CFS Observatory

Neil Riley Chairman, ME Association

Dr Charles Shepherd

Dr Nigel Speight

Sir Peter Spencer Chief Executive Officer, Action for ME

Des Turner MP Chairman, All Party Parliamentary Group on ME

Dr William Weir

Mary-Jane Willows Chief Executive Officer, Association of Young People with ME

Andrew Stunell MP Vice Chairman, All Party Parliamentary Group for ME/CFS

Minutes and Verbatim Transcript: APPG on ME meeting 2 December 2009

Minutes and Verbatim Transcript of APPG on ME meeting 2 December 2009 published

Date of next meeting of APPG on ME announced as Wednesday 10 March 2010

Shortlink: http://wp.me/p5foE-2E1

ME Association

Thursday, 14 January 2010 15:22

The next meeting of the All Party Parliamentary Group on ME will be held 1.30-3pm, Wednesday 10 March 2010, Committee Room 18, House of Commons. The agenda will follow in due course.

The APPG on M.E. will be open to members of the public. Before they travel, visitors should check for announcements on the Action for M.E. and ME Association websites, as the meeting room may change at very short notice if it is required by a parliamentary committee.

Entrance to the meeting will at the St Stephen’s Door to the House of Commons, and then ask the way to Committee Room 18. Please allow sufficient time in case there are big queues waiting to go through the security gatehouse. There is separate access for people in wheelchairs.

The minutes and a full transcript of the last meeting in December are available for downloading here.

Please note: amendments to minutes should be put in writing to the Secretariat one week before the meeting.

Email Tristana Rodriguez

or write to: Tristana Rodriguez, Action for M.E., Canningford House, 38 Victoria Street, Bristol BS1 6BY.

The official minutes of the meeting of the APPG on ME held on 2 December 2009 – together with a verbatim transcript – are now available for downloading from this website.

In response to demand, they are offered in both pdf and Word formats.

Minutes APPG on ME 02.12.09 Word

Minutes APPG on ME 02.12.09 PDF

Transcript APPG on ME 02.12.09 Word

http://tinyurl.com/yhcxs3c  

 

Next meeting – 10 March, Committee Room 18, 1.30-3pm.

You can find them at the MEA website at: http://tinyurl.com/ybgel9e

APPG on ME website

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.

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

———————————-

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 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 Nicky Zussman 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

RiME: XMRV and MPs Referendum on ME Research

RiME:  XMRV and MPs Referendum on ME Research

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

Permission to Repost

Campaigning for Research into ME (RiME)

XMRV and MPs Referendum on ME Research

In the wake of news on the XMRV virus [retrovirus], it might be an opportune time to write to those MPs who haven’t signed up to the MPs Referendum on ME Research. For more details and list of MPs who have signed see www.rime.me.uk

The article that was on the front and inside pages of the Independent is below. It should print off neatly on one page.

Below that is a letter that can be used as it is or as a guide.

Paul Davis rimexx@tiscali.co.uk

——————-

Front Page of  THE INDEPENDENT Friday 9 October 2009

Has Science found the cause of ME?

Breakthrough offers hope to millions of sufferers around the world

By Steve Connor Science Editor

SCIENTISTS SAY they may have made a breakthrough in understanding the cause of chronic fatigue syndrome – a debilitating condition affecting 250,000 people in Britain which for decades has defied a rational medical explanation.

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