ALL PARTY PARLIAMENTARY GROUP ON ME (APPG)

BACKGROUND

On 26 November 1997 the 12,502 ForT Petition (A) was presented to Lady Mar outside the House of Lords.  Tony Wright (TW), Labour MP for Great Yarmouth, attended the presentation: he gave ForT his card and said he wanted to help.  ForT wrote to TW on 9 January 1998 asking if he would take the lead in setting up a parliamentary group on ME; Mr Wright replied positively on 22 January.  In early 1998 ForT wrote to 200 MPs.  ForT raised the need for a Parliamentary Group on Myalgic Encephalomyelitis (ME) and recommended a body of politicians which would campaign (APPGs are allowed to lobby) to get ME recognised as a physical organic illness and public funding into the underlying physical causes of ME.  On 25 March ForT had a telephone meeting with TW; Mr Wright said he would take the lead in setting a Parliamentary Group on ME and seemed receptive to ForT's ideas.  ForT suggested at this meeting a small cohesive group of twenty MPs.  BRAME also approached TW, their own MP, in the wake of their 14 May meeting.

Sadly, when a preliminary meeting was arranged November 1998 ForT and BRAME weren't consulted: the ME Association (MEA) and Action for ME (AfME) were invited and AfME was awarded the secretariat.

OBJECTIVITY

RiME believes that what people with ME primarily want is the Government to fund research into the aetiology/pathogenesis of ME.  They were heartened, therefore, when the Chair of the All Party Parliamentary Group on ME (APPG), Tony Wright MP, said in The House of Commons May 12 1999 -

That not a single penny of Government money between 1996 and 1998 was allocated to investigating the physical cause of 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 College's Report on CFS, saying it -

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

Paul Burstow (Lib Dem. Vice-Chair of APPG) pointed out that the World Health Organisation (WHO) lists ME as a neurological brain disorder; and said CR 54 had attempted to define ME out of existence by lumping it in with 'CFS'. Severe ME sufferers, he added, had been offered inappropriate treatments. They include CBT which might suit CFS and GE.

In addition to criticising CR 54 Mr Burstow also drew MPs attention to the need for research into the underlying physical causes of ME.

Compare and contrast what TW said then to what he said on 9 December 2004 (B) -

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

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

CONTENT

First, people are concerned about the Chair's use of the term 'CFS/ME'; the original term in the Group's title and, still, is Myalgic Encephalomyelitis (ME).  TW has not defined what 'CFS/ME' means other than to say 'others use it' (Ref 21).  What one gets is a circular argument which lands at the door of the Health Department which, in turn, says we're using it because others are using it... (C).  Many believe the inclusion of the term Chronic Fatigue Syndrome, commonly defined in the UK by the Oxford Criteria (D), in the Group's work is steering the agenda away from the need for proper research into ME (the pattern of symptoms described by Ramsay (E)): epidemiology; aetiology; pathogenesis - what people with ME (PWME) want - toward psychiatric models of treatment - GE/CBT/Pacing... - which might help some with 'CFS'.

APPG meetings 2002-4 became dominated by the Chief Medical Officer (CMO)/Medical Research Council (MRC) Reports/Processes and the types of treatment they recommend: GE/CBT/Pacing.  TW now says that GE/CBT does benefit PWME.  The basis for his view : The York Review (Refs 83, 99).

The York Review was the systematic review of 'CFS/ME' literature commissioned by the CMO Working Group.  Both the CMO and MRC Reports drew heavily on the York Review.  Based at an NHS centre at York University the York Review was led by five people none of whom had a medical degree.  This group was assisted by an 'expert panel': key members were Simon Wessely (F), Harvey Marcovitch (G), Chris Clark, (Director of AfME) and Tony Pinching (Medical Adviser to AfME).  The CMO stated Sept. 1999, 'Turning to your point about the CFS/ME Working Group's Reference Library.. much of the database was provided by Professor Simon Wessely... '  The York Review reported promising results for GE/CBT re. those who attended outpatient clinics; did the 'those' meet the WHO definition of ME (H) or the Ramsay criteria?; the clinics would encompass CFS psychiatric/psychological units.

Scientific studies which point to GE being harmful to ME patients were excluded, e.g.

So were scientific studies which cast doubt on the efficacy of CBT, e.g.

The York Review did not include one study on severely affected PWME.  On this basis alone it cannot be accurate or objective.

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'.

Fatuous Statements re. PACE Criteria -

On 9 December 2004, TW said (B) -

Criteria such as the Oxford and Fukuda do not describe the pattern of symptoms people with ME have (Ramsay definition enclosed).  Let's look at one of them -

The CFS Oxford Criteria was set out in the Oxford Guidelines -

MC Sharpe et al. A Report - Chronic Fatigue Syndrome: Guidelines for Research, JRSM Vol.84, Feb. 1991, pp 118-21.

Of the 21 clinical and scientific researchers who wrote the Oxford Guidelines, eight were in psychiatry or psychology, another six were research scientists, non-psychiatric clinicians were few (see BM Hyde, The Clinical and Scientific Basis of ME/CFS, 1992, 12).  Notable exclusions were DS Bell, EG Dowsett, BM Hyde, AM Ramsay and JS Richardson, experts on ME and its epidemiology.

The Oxford Criteria is too inclusive.  A number of different types of illness including ME are being lumped together under the single banner 'CFS'.  In the words of Dr Dowsett, 'CFS' is a 'facile euphemism for ME ... which enmeshes this serious and potentially life-long neurological illness in a web of trivial fatiguing sub-entities ... '.

The Royal College's Report on CFS 1996 used the Oxford Criteria and claimed up to 1.4 million people in the UK had CFS.  Estimates of ME incidence are much lower.

A copy of the Oxford Criteria is included with the Report.

People with ME fear the results of the PACE trials, as they do those associated with the new 'CFS/ME' NHS centres and satellites.  The all-inclusive, one-size fits all approach will mean the results will most probably be successful for the majority of participants listed under the 'CFS/ME' banner but then used as an excuse to set back the case for physical research into G93.3 ME.

The above feel the Chair of the APPG should not have made such a brash and definitive statement without having consulted more widely.

They wonder if he, as a member of the ruling party, is simply endorsing what has already been decided for the sake of convenience and political expediency.

What is scary is that politicians can make public statements like this which are against the interests of vulnerable people; and that they are being allowed to get away with it.

ACCESS

If one was to talk broadly about 'competing priorities', one could say with reasonable safety, 'psychiatric vs 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 ...

It can be no coincidence that those who don't: RiME, MERGE, 25% Group, Hooper et al ... haven't been invited.  Officials from AfME have now been invited to address APPG meetings no fewer than seven times.

It should be pointed out that the number of PWME subscribing to AfME is extremely small.  Currently AfME says it has around 9,000 members.  From 1991 to 2000 the title of the organisation was Action for ME and Chronic Fatigue.  Many believe that a significant number of its subscribers now (maybe half?) do not have ME but fatigue conditions.  With this in mind it is estimated the number of ME subscribers might be around 0.02%.

It should be pointed out also that AfME is not a democratic organisation.  It practices a discriminatory caste system.  At the top of the pyramid are 'members of the council'; these are allowed to attend AGMs and appoint trustees.  Below them are the 'subscribers' or 'beneficiaries of the charity': those who pay their subs, raise money, run groups ...  They are not allowed to attend AGMs or elect trustees.

The Charity Commission has received a number of complaints re. the nature of AfME's membership and its undemocratic practices.

On the question of AfME: Was it appropriate for TW to get involved in the dissemination of AfME's Guidelines on the Management of CFS/ME to the Health Department and publicise this at the December 2002 APPG meeting?  The types of treatment advocated in this guide include GE, CBT and Pacing.  AfME claims not only do these modes of treatment help patients but that GE can be used to combat inactivity.

AfME is heavily funded by the government.

TW has maintained all along that the role of the secretariat (AfME) is purely administrative: that two AfME officials are allowed to APPG meetings - one to take minutes, the other as an observer only (Refs 5, 18).  At the APPG meeting addressed by the MRC on 23 May 2003, TW allowed the Director of AfME to state it's welcome for the MRC strategy and asked to place on record AfME's pleasure that a study into pacing had been funded.  This, he said, was the approach consistently reported to be beneficial by people with CFS/ME.

RiME and 25% Group Disqualified:  TW said in a letter dated 6 June (Ref 57) that RiME and the 25% Group (national registered charity which represents severely affected PWME) will never be invited to speak at the APPG - the reason: they have campaigned to gain access.  If an ME Group representing severely affected PWME asked to say something on their behalf at the House of Commons, would this be a crime?

The RiME Petition of 2002 (I): The Petition, condemned by the MEA and AfME, was presented to the MRC on 2 September 2002; the presentation was followed by a meeting.  RiME asked that the Petition be featured at an APPG meeting.  The request was denied.  The correspondence between RiME and TW on this subject is cited (Refs 10, 12, 13, 14, 15, 16, 17, 18).

Conjecture:  TW appears to be saying that if the APPG said yes to RiME (a Group which asked) addressing a meeting it would then be inundated by requests from other ME Groups (Refs 14, 16).  The Vice-Chair The Reverend Martin Smyth said on 16 June 2004 , '... we have not been keen at any time just to give place to campaigning organisations because it will mean that they come with their own agenda and open the door for others'.

Decisions should surely be based on the individual merits of each application not on what one person thinks might or might not happen in the future.  Many of the groups TW refers to supported the Petition.  People's disappointment with TW's decision is clear (Refs 27, 39, 40, 41, 42, 44, 46, 48, 49, 53, 55, 58, 60, 66); and others.

The basis for the above decisions seem all the more strange in the light of statements made by TW 1999 in which he said the APPG welcomed submissions from individuals and groups (Refs 4, 5).

RiME is particularly concerned, in this respect, that the plight of severely affected PWME (an estimated 60,000) is being neglected.  Enclosed is an article on a person who is bed-ridden and has to be fed through a tube.  What these people desperately want is someone to investigate what is going wrong with their bodies.

Why haven't some recent APPG meetings been about ME research?  And the absence of public funding into the aetiology/pathogenesis of ME?

Recent research findings from two British Research charities: MERGE, and the Chronic Fatigue Syndrome Research Foundation, are good examples of what can be achieved even with a limited budget.

MERGE have carried out studies involving acetylcholine.  And found the blood flow response to acetylcholine in people with ME/CFS, as well as being abnormally high was also abnormally prolonged (by about 10 minutes).  They go on to suggest that in ME sufferers, there is either a reduced amount of cholinesterase available to remove the acetylcholine, or else it is not as effective.

The CFSRF have studied the genes of ME patients.  They analysed 9,522 genes using a new scientific technique known as microarrays.  It showed that fifteen genes became more active, and one less active in the ME/CFS patient group, but remained normal in the control group.  They are aiming to develop diagnostic tests and to identify therapeutic targets.

Neither MERGE, nor the CFSRF have ever been invited to address an APPG meeting, or any other UK party researching the physical causes of ME.

OPENNESS

Four years ago TW appeared to be condemning a report on CFS (CR 54) co-authored by S Wessely, promoting GE/CBT.  Today he appears to be supporting a report on CFS (York Review), which drew heavily on the work of the 'Wessely psychiatrist', promoting GE/CBT.

It is interesting to note that many of the references in CR 54, written or co-authored by Wessley, correspond to those in the York Review, e.g.

As do references written or co-authored by members of the 'Wessely School', e.g.

Mr Wright has been asked to explain his contrasting views but has not (Refs 52, 83, 96, 99, 108, 110, 111, 113, 117, 118).

Martin Smyth Vice-Chair of the APPG, 16 June 2004 - '... at times we get confused with the different arguments put forward by one side or the other.  I notice in RiME's report following through correspondence it was TW himself who claimed that the Royal College's Report on CFS was compiled by a panel of two heavy-weight psychiatrists.  It was biased towards a psychiatric diagnosis of ME'.

ACCOUNTABILITY

First, some written questions sent to the APPG Chair and members have not been answered (Refs 22, 23, 52, 55, 56, 64, 70, 74, 78, 79, 80, 85, 88, 93, 105, 110, 117, 123, 125, 132, 142, 144, 154, 156); there are others.  Second, some questions in letters to the former have not been adequately answered (Refs 14, 21, 27, 42, 50, 57, 58, 60, 70, 81, 83, 96, 99, 110, 138, 152); there are others.

The minutes of meetings are nearly always late going out (responsibility of AfME up to December 2004).  This makes it difficult for patients to respond.  The minutes of the June 2002 APPG meeting, for example, had not been distributed after fifteen weeks.  Mr Wright admitted 13 February 2003 that the time was too long and said, 'I will ... endeavour to make sure they are distributed more quickly in future'.  Well, during 2003 AfME was put in charge of writing and publicising the minutes of APPG meetings via their website.  Six months on, it would appear that the minutes of the October 2003 meeting, addressed by Dr Pinching on the £8.5m NHS funding, still hadn't been publicised (Refs 105, 108).

The Committee On Standards In Public Life lays out certain principles which should guide the conduct of MPs.  These include objectivity, openness and accountability.  Are these criteria being met?

It is important to be clear who one is talking about in these respects.  The issues pertaining to objectivity and openness lie essentially at the door of Tony Wright.  Those pertaining to accountability with TW and other APPG officials/members.

The grievances here obviously raise questions about the way in which the APPG is and can be run.  A copy of this report is being sent to The Parliamentary Committee on Standards and Privileges.  RiME will be writing to the Parliamentary Commissioner with some proposals re. 'a tightening up'.

Some feel too much power rests with the Chairs of APPGs.  They appear accountable to no one.  If they abuse their powers, there do not seem to be procedures in place to check this.  The Parliamentary Rules governing APPGs stipulate that there must be an AGM each year but don't say a group's committee should meet periodically to discuss the group's business and welfare.  There appears to be no collective responsibility where the APPG on ME is concerned (Refs 64, 74, 78, 79, 80, 85, 88, 93).

The Vice Chair of the APPG The Reverend Martyn Smyth 'confessed' in a letter dated 16 June 2004 that the four current officials of the APPG don't meet, '... there has been no meeting of the four of us ...'.

TW said 1999 all groups and individuals will have equal access to APPG and letters would be passed to APPG Committee for consideration (Refs 4, 5).  Is this happening?

Not everyone seems happy with the way the APPG is being run -

Paul Burstow (Vice-Chair) 10 April 2003: 'What I said in the debate in 1999 is still what I believe.  I do not personally approve of every presentation to APPG or what they say.'

Martin Smyth (the other Vice-Chair) 19 August 2003: 'I have taken up the question of CFS being used regularly along with ME and have objected to the promotion of psychiatric models of treatment.'

(for comments made by APPG members please see Refs 26, 27, 28, 32, 33, 35).

Increasing numbers seem of the view that the APPG is not a forum for genuine ME groups/patients to express their views but has become a vehicle for promoting government policy: 'spin on spin', e.g.

AWARENESS.   TW has made it clear that the APPG is about awareness and not lobbying.  He refers to Parliamentary Rules in this respect.  (An APPG can lobby if it wants to (J)).  Accepting that the APPG is currently about awareness, is it the right kind of awareness?  Many with ME say no.  They don't believe the CMO/MRC processes with their emphases on GE/CBT/Pacing are in their interests and don't want this impression conveyed to MPs/Lords.  And they don't want politicians to only be made aware of one line of thinking (misleading as it is).

FOOTNOTES

Paul Davis / Marian Anderson, 25 March 2005

RiME, 10 Carters Hill Close, Mottingham, SE9 4RS