Campaigning for Research into Myalgic Encephalomyelitis

 

RiME

 

Happy New Year from all at RiME. Thanks to all those signed the Petition, wrote to Sir Alistair Graham and sent in other letters. More about all that in RiME's forthcoming newsletter.

 

Meanwhile, please read the following enclosure on the APPG on ME. If you want change, then please act and pass the information on to others.

 

Best Wishes, Paul Davis

 

 

 

APPG ON ME: GETTING SOMETHING MORE EFFECTIVE

 

APPG CHAIR DESERTS ME PATIENTS ON ME RESEARCH ISSUE

 

On Dec. 9 2004 Tony Wright MP, Chair of All Party Parliamentary group on ME (APPG), said:

 

I do not believe it is my place to decide how research resources are provided in tackling ME. Instead I believe it should be the responsibility of the MRC, an independent body that receives its grant-in-aid from the Office of Science and Technology, to decide how resources should be used between competing priorities.

 

Compare/contrast to what he said May 12 1999 in the House of Commons:

 

That not a single penny of Govt money 1998 was allocated to finding a physical explanation for ME

 

That the balance of our research effort needs to be adjusted (compared ME Research to Aids and Cancer)

 

Called for 'an exhaustive and extensive epidemiological study' to discover how widespread ME has become

 

Condemned the Royal Colleges Report on CFS, saying it:

 

was top-heavy with psychiatrists

 

rejected any role for a viral cause of ME or for structural or functional abnormalities in the muscle or brain

 

recommended the 'wrong', 'inappropriate' treatments: via Dr Terry Hedrick, Mr Wright specifically criticised the use of Graded Exercise (GE) and Cognitive Behavioural Therapy (CBT).

 

 

'Competing priorities': Is the APPG Chair/APPG Neutral Today?

 

Not only does the APPG Chair, today, appear not to be pressing the case for Govt funded research into the epidemiology, aetiology/pathogenesis of ME, there is worse: he appears to be promoting the other side:

 

If one was to talk broadly about 'competing priorities', one could say with reasonable safety, 'psychiatric v physical interests'? Well, there doesn't appear to be any doubt which side the APPG Chair has favoured in recent years. One only has to glance at the parties he invited to the four APPG meetings between 2002-4 which pertained to national issues. Meetings were only addressed by those parties (MRC officials, selected members of the CMO Key Group, AfME) which supported the CMO/MRC processes with their heavy emphases on psychiatric models of treatment: GE/CBT...

 

Furthermore, the APPG Chair has used the APPG to publicly endorse the PACE (Pacing and CBT Evaluation) and FINE (Fatigue Intervention Nurse Evaluation) Trials currently being funded by the MRC. At the end of the June 2002 APPG meeting, addressed by MRC officials, the APPG Chair said he was encouraged to see ME becoming a topic of 'serious research'? The only projects funded then (and since?) by the MRC, in that context, were PACE and FINE. The APPG Chair never said 'what about research into the physical causes of ME'. (The Director of AfME endorsed the PACE trials at the May 2003 APPG meeting, addressed once again by MRC officials, and never asked about/for physical research).

 

Not one of these meetings (or ever?) was addressed by parties who are researching the physical causes of ME in the UK eg MERGE, The CFS Research Foundation... Or patients and carers who want that type of research.

 

The APPG Chair is now supporting the very psychiatric psychological modes of treatment which he condemned in 1999. He now says that GE and CBT do help people with ME (letter to severely affected person with ME Dec. 2003 , letter to relative of ME patient Aug. 2003 ): his source - The York Review:

 

The York Review did virtually all the work re. the CMO Report on 'CFS/ME' (The APPG Chair, incidentally, endorses the latter report and now uses the term 'CFS/ME'). The Review drew heavily on the work of Wessely, ('much of the database was provided by.. Wessely' - CMO, Sept. 1999) and like-minded colleagues and reported promising results for GE and CBT. Studies which challenged the role of GE and CBT were excluded; and there was not one study on severely affected people with ME.

 

Many of the references in The Royal Colleges Report which Mr Wright condemned 1999, written or co-authored by Wessely, correspond to those in the York Review which he cites; so do other references, written or co-authored by members of the 'Wessely School', eg Sharpe and Chalder.

 

The APPG Chair's statement at the start of this piece is a cop out, anyway. The MRC is not the only Govt agency which can fund research into diseases such as ME. The Health Dept, if it wanted, could put substantial ring-fenced money into researching the physical causes of ME tomorrow. Does one see the APPG putting the case for this?

 

RiME's full Report on the APPG on ME will soon be published and presented to the Committee on Public Standards and The Parliamentary Commissioner. The Report asks if the APPG is being objective, open and accountable (the Report references a series of written questions to do with the issues above which have either been inadequately unanswered or not at all).

 

If you want to write to Mr Wright: Tony Wright MP 21 Euston Road, Great Yarmouth NR30 1DZ email: wright@parliament.uk

 

 

WHAT NEXT? Well, the good news is that the current APPG on ME might not exist for much longer (assuming there is a general election this spring). It will be a question of trying to replace it with something different. Please consider writing to your MP (if they are 'ME Friendly') and ask if they would take the lead in setting up a new Parliamentary Group on ME following the general election. It is preferable that people write their own letters but we do provide a pro forma for your convenience, which can be amended as you choose.

 

Following the fiasco of the last five years, it is obviously important that the Group's Officers act in the interests of ME patients: specifically, that they lobby to: get Myalgic Encephalomyelitis (the pattern of symptoms described by Melvin Ramsay) recognised as a neurological illness; secure public funding into the epidemiology, aetiology and pathogenesis of ME: and that the Group does not become a puppet of the party in power.

 

If you get a promising response, please let us know.

 

 

RiME 10 Carters Hill Close Mottingham SE9 4RS rimexx@btinternet.com

 

 


 

 

House of Commons

London SW1A OAA

 

 

All Party Parliamentary Group on ME (APPG)

Time for Change

 

 

Dear

 

With the likelihood of a spring election, I am naturally concerned about various issues at home and abroad; but my biggest concern is about the illness Myalgic Encephalomyelitis (ME) and the lack of Government funded research into its underlying physical causes.

 

ME affects an estimated 240,000 in the UK (one-quarter of which are severely affected - some are permanently bed-ridden, in constant pain and cannot attend to basic needs) and costs the country around 4 Billion pa.

 

I hope having read the information enclosed, you will agree with me that ME patients and carers have not had fair representation at Westminster, via the APPG. I believe that, amidst their busy schedules, MPs need to get better informed about the illness and listen more carefully to what the patients - those who suffer 24/7 - want. Their primary wish, in my opinion, is that the Government investigates what is causing this devastating neurological illness so that people have a chance to recover and resume a useful role in society; there is also the need for a national epidemiological study into ME: it would need to be publicly funded; based on a sound criteria; and include the severely affected.

 

It is possible the current APPG will only run in its present form for the rest of this Parliament's term. Frankly, I don't have trust or confidence in its current Chair and believe it time for some change re. personnel. I wonder, assuming you get re-elected, if you might consider standing for the post or as one of the officers and could help develop a Group which will work with/in the interests of ME patients and not the ruling party of the day.

 

 

I look forward to hearing from you.

 

 

Yours Sincerely,