Fall of the Cross Party Group on ME

Feb 8th, 2013 • Category: News

How did you feel when you heard the Cross Party Group (CPG) on M.E. had collapsed?  Sad, dismayed, angered or wondered what the CPG was?

The CPG on M.E. started in 2000 with the support of many MSPs and enthusiasm to bring about change in the understanding of M.E. and for the lives of people affected by it.  It ended in 2012 with a breakdown in the support of the remaining MSPs, following a disagreement amongst the 6 members of the working group for a Centre of Excellence / Lead Clinician, a controversial vote and the subsequent actions of a number of CPG members.

What was this dispute about?

There was lack of consensus on the question of which patients would be included in a Centre of Excellence: strictly defined M.E. patients only or patients who met the criteria for ME-CFS, the term used in the Needs Assessment and Scottish Good Practice Statement for GPs.

On 29th August, Mary Fee, MSP, convenor of the CPG, attended a working group meeting having been informed of the disagreement.  Each side were to bring firm evidence in support of their argument. The ME-only group based theirs around definition and the problems associated with compromise, arguing that:

  • Only those who fitted the WHO Classification should benefit from the services of any Centre of Excellence as M.E. and CFS are unrelated and must be treated separately.
  • If M.E were to be mixed in with a “bucketful of illnesses” there would be inequality of care and resources would be wasted over a broad range of conditions making progress impossible.
  • A compromise would mean the introduction of fatigue clinics.

The 3 members who recommended that a Centre of Excellence should encompass both conditions brought 37 pages of references taken from a range of published reports, reports of parliamentary committee meetings and minutes of CPG meetings that supported the use of M.E. and CFS as equivalent terms in practice, including:

  • The complete definition of the classification WHO ICD10 93.3 in which Post Viral Fatigue Syndrome (PVFS) is the main term with benign M.E subordinate to it.
  • CFS is the term used by international researchers and the medical profession.
  • UK and Scottish governments acknowledge M.E. and CFS as interchangeable terms.

With no resolution, the convenor suggested to the three members who were insisting on an ME-only Centre of Excellence that, if they thought they had the support of the CPG membership, they could put their proposal to a vote – cautioning that MSPs would find it difficult to continue to support the CPG if it was not prepared to acknowledge the term – ‘ME-CFS’ – that the government recognised.  This did not imply that the CPG would cease to raise awareness of the specific nature and impact of M.E.

In spite of this proviso the three members supported a vote and the representative of the Tymes Trust on the working group drew up a proposal which was circulated via the secretariat to the CPG membership.  This one page proposal put forward a “choice” for a Centre of Excellence based on:

  1. “WHO ICD10 G93.3 neurological disease M.E”,  OR
  2. “Umbrella term ME-CFS to include a spectrum of fatiguing conditions”.

The voting options were preceded by a series of statements setting out reasons why CPG members should vote for option 1, while no balancing counter-statements were provided in support of option 2.  The inclusion of “a spectrum of fatiguing conditions” in option 2 was controversial.  There could be speculation as to whether the second option was formulated as a result of a misunderstanding or whether it was calculated to bias the vote.  What was certain was that it did not represent the argument put forward by the other three members of the working group who agreed with Mary Fee, MSP, that a pragmatic approach was desirable to keep open a dialogue with the health department and medical bodies.

What were the arguments for option 1?

The first option stemmed from the view that M.E. was being damaged or undermined  by the terms CFS or ME-CFS; that the diagnostic criteria for CFS lacked precision and cast too wide a net to be useful; and that there were problems caused by confusing CFS with chronic fatigue, leading to misunderstanding and improper diagnosis of the illness.

However, as Dr Neil Abbot of ME Research UK – commented he was astonished at both the voting options on offer, neither of which represented a valid way forward – pointed out in his subsequent comments, the WHO ICD10 G93.3 is a classification. It has its uses for categorising diseases, but is not a diagnostic tool in itself, and an acceptable working definition of M.E. would still need to be specified for everyday use in a Centre of Excellence.  He also noted that few if any clinicians or scientists today apply or even recognise the older definitions of M.E., and the practical usefulness of the very new International Consensus Criteria’s (ICC) for M.E. remains to be established. None could form the basis of a Centre of Excellence, at least at the current stage of knowledge; however, a Centre of Excellence for ME/CFS could certainly examine whether different definitions of CFS and M.E. do, in fact, define clinically different groups.

A few days after CPG members had received the voting options, the 25 % ME Group circulated a paper in support of the first option which consisted of a collection of quotations from various sources to back up the term ‘M.E.’ and their reasons for rejecting ‘CFS’ as a diagnostic term.  From the statements circulated to the CPG in support of option 1, the evidence suggests that debates about terminology underpinned this option rather than scientific and medical rationales for a Centre of Excellence to resolve these debates.

What about option 2?

Dr Abbot’s comment was this: “I doubt if anyone – on the CPG or anywhere else – would actually vote for this option (certainly not me), since this is not what a Centre of Excellence for ME/CFS would be looking at – it’s a red herring.”

The three other sub group members submitted a response to the voting proposal making clear that the second option did not reflect the views put forward to the working group.  This paper looked at evidence which supports the use of M.E. and CFS as interchangeable or linked conditions: the WHO classification; their pragmatic use as synonyms by the main M.E. charities and UK and Scottish governments; and the acknowledgement that biomedical researchers, both internationally and in the UK, are considered to be studying a similar body of patients.  It was noted that the use of CFS by some UK psychiatrists to mean a psychiatric disorder is at odds with the WHO classification.

In a Scottish context, the petition of the CPG on M.E. (2001), the Report of the Short Life Working Group (2002), the Health Care Needs Assessment (2010) and the Scottish Good Practice Statement (2010) all indicate that M.E. and CFS are understood as interchangeable terms in practice which acknowledge a range of severity and the possibility of sub-types.  Many medical professionals, researchers and patients agree that a composite term is unsatisfactory but there is little point in arguing over labels while scientific research is trying to unravel what underlies M.E. and CFS.  What matters is the understanding that ME/CFS/PVFS are classified as neurological conditions with overlapping symptoms and a spectrum of severity.

The paper also commented on long standing problems within the CPG which were being obscured by the focus on definition and terminology.

Firstly, inability to engage with a political process. This was evident from an ongoing lack of understanding from some members of what a CPG is for; of how to work in partnership with MSPs; of how to share our knowledge with them and listen to their guidance on how to achieve the aims of the CPG.  An understanding of the accountability of public and professional bodies was also overlooked consistently: for example, the allocation of public money and equality of care for patients.  Having campaigned against the unequal treatment of ME-CFS patients, the credibility of the CPG would be undermined if it were to argue now for a Centre of Excellence that advantages only some from the ME-CFS group.

Secondly, acknowledgement and understanding of the accountability of patient representatives in the CPG rarely featured during meetings.  The paper pointed out that CPG members are not elected by anyone;  nevertheless it is reasonable to expect them to have due regard to what might be the views of a wider ME-CFS community whose interests are affected by the decisions taken on their behalf.

The sub-group members’ response acknowledged the reality of the impact of ME-CFS on lives and the injustice experienced by individuals and families.  It also acknowledged that the CPG had no power to create a Centre of Excellence for M.E. or ME-CFS and that holding out for the former was unlikely to be successful and that the latter remained as distant as ever unless some compromise could be agreed.  It also noted its appreciation of the support given by MSPs, support that should never be taken for granted.

What took place at the final CPG meeting on 19th September 2012?

Before announcing the result of the vote, Mary Fee, MSP, who has a personal interest in ME-CFS, said that for MSPs, all groups standing in parliament should be productive, have a level of influence and be seen as working together towards a common goal.  She commented on the problem of whom the CPG represented stating that the argument had rumbled on and had created a considerable amount of friction over the life of the group.  She felt that it would be backward looking to limit the CPG to only M.E. sufferers in the ME-CFS spectrum and that she would not continue as convenor to such a group and doubted whether other MSPs would continue their involvement.

Siobhan McMahon, deputy convenor, agreed and former CPG convenor, Alex Fergusson, said that, although in an ideal world there could be a CPG for M.E. alone, in the real world that wasn’t going to happen so the CPG should accept a compromise of ME-CFS in order to maintain influence.  Views were expressed about both the need to separate M.E. and CFS and the validity of acknowledging ME-CFS; the misleading nature of the options; and, as the debate raged on, in a moment of acrimony, outrage that MSPs should threaten and blackmail members with the vote.

As the convenor needed to draw the meeting to a close, the result of the vote was announced – a win for the ME-only lobby.  Out of 81 possible votes,

  • Option 1: ME-only = 30
  • Option 2: ME-CFS and “fatiguing conditions”= 5
  • Abstentions = 12.

Later this result was reported as being a “landslide”. However, only 37% voted for a CPG for ME-only.  Putting it another way: that makes 67% who DIDN’T vote for it.

In closing the meeting, Mary Fee, MSP, proposed that, given there had been some backtracking on CFS by those members who supported option 1 and that there was now some confusion over the options, the result of this vote could be put aside and the CPG could reconsider redrafted options which would more accurately reflect the views now being expressed in order to identify if there was indeed consensus within the CPG.

Subsequent actions taken by those CPG members who supported option 1 meant that the convenor’s proposal was never enacted.  On the 20th September Simon Lawrence, chair of the 25% ME Group, placed a notice on the charity’s Facebook page announcing the outcome of the vote and called for it to be upheld.  This could only be interpreted as a challenge to the convenor’s offer to try to identify consensus within the CPG and a positive way forward and a test of the MSPs’ views about the viability of the CPG if option 1 were adopted.

Furthermore, 22 members signed a letter of complaint to the Standards Procedures and Public Appointments Committee at the parliament about the convenor’s actions in respect of the vote and gave notice of no confidence in her if she refused to uphold the vote.  These challenges to the convenor and deputy convenors of the CPG were astonishing and left the convenors and supporting MSPs no choice but to resign from the CPG and bring about its closure.

According to comments on the ME Association webpage announcing the closure of the CPG, the members who supported option 1 remain resolute in their belief that their actions were justified.  The questions remain whether their actions were examples of good advocacy and representation, or whether M.E. and CFS patients (who have been left with no Cross-Party representation for their illness) deserved better and were badly let down by people purporting to speak on their behalf.

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