The following article is the text of the Edinburgh ME Self-Help Group’s article, “Fall of the Cross Party Group on ME” of 8 February 2013, formerly posted on their website
Update – 15th October 2018 – The views of the events leading to the closure of the Cross Party Group written by the Tymes Trust and by the 25% Group are reproduced at the end of the Edinburgh ME Self-Help Group’s article. The Tymes Trust Alert 2013 and the 25% Group article are also available by following the respective links.
The views expressed in the three articles are those of the Groups themselves i.e. Edinburgh ME Self-Help Group, the Tymes Trust and the 25% Group.
Edinburgh ME Self-Help Group’s article, “Fall of the Cross Party Group on ME”
How did you feel when you heard the Cross Party Group (CPG) on ME had collapsed? Sad, dismayed, angered or wondered what the CPG was?
The Scottish Parliament’s CPG on ME started in 2000 with the support of many MSPs and enthusiasm to bring about change in the understanding of ME and for the lives of people affected by it. Despite a very successful parliamentary reception in May 2012, the CPG on ME ended later that year 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 ME 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 2012, 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 ME 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 ME 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 ME 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 ME
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:
- “WHO ICD10 G93.3 neurological disease M.E”, OR
- “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 ME 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, Dr Neil Abbot of ME Research UK commented that 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 ME 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 ME, and the practical usefulness of the very new International Consensus Criteria’s (ICC) for ME 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 ME 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 ‘ME’ 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 ME and CFS as interchangeable or linked conditions: the WHO classification; their pragmatic use as synonyms by the main ME 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 ME (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 ME 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 ME 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 ME 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 ME 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 ME 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 ME 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 ME 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.
Tymes Trust
Tymes Trust Alert 2013-03
19 February 2013
Please find below a Statement which was issued last week. It is a sad day when such statements become necessary, but we cannot ignore the situation and I feel sure you would want to be informed.
THE END OF THE CROSS PARTY GROUP ON ME
Statement by Tymes Trust
The Young ME Sufferers Trust (Tymes Trust) values its reputation. In the aftermath of the demise of the Cross Party Group on ME in the Scottish Parliament, EdMesh published a version of the events which in our view misrepresented not only the facts but also the actions of the Trust. They granted the Trust a right of reply to put the record straight but then withdrew it.
Let us be clear. The Convenor of the Cross Party Group initiated a vote, requested the Trust to draw up the voting options, and then (in writing) approved the suggested wording, commenting that the options ‘appear clear’. It is dishonourable of EdMesh to imply bias on the part of the Trust after the vote did not go the way they favoured. And any suggestion that we would not wish to see all patients appropriately helped is disgraceful.
It is vital that we now reflect with accuracy on what really happened in the Scottish Parliament, and on the opportunity which Scotland lost that day, especially in light of subsequent events.
A split in opinion existed within the working group considering a centre of excellence for ME and a lead clinician. Some wished to see a specialist ‘ME’ clinic (such as those formerly run by Dr Elizabeth Dowsett and Dr Abhijit Chaudhuri) rather than a further proliferation of ‘ME/CFS’ fatigue clinics, with their usual emphasis on therapists rather than knowledgeable doctors who understand the discrete neurological disease myalgic encephalomyelitis with its tendency to severity and chronicity.
The meeting of the 29th August had been arranged specifically for consultant neurologist Dr Abhijit Chaudhuri to attend and inform the debate with his vast experience and authoritative knowledge on the subject. Dr Chaudhuri (initially under leadership from Professor Peter Behan, and subsequently as lead clinician himself) had run an ME clinic in Glasgow at the Southern General Hospital Neurology Department. Patients were referred here from their GPs for diagnosis, and if they were found not to have ME but, for example, chronic fatigue, those patients were referred onwards to appropriate services such as psychotherapy or other appropriate treatment. Patients were also brought into hospital for further testing if required. Drug trials were conducted and they had a caseload of research patients they were able to pass to other researchers. ME was properly provided for, and no category of patient was ignored.
Dr Chaudhuri is outspoken on his belief that ME and CFS should be separated: ‘Unless neurologists start to take an interest, and segregate ME out from the rest of chronic fatigue patients, it will be very hard to try and develop our understanding, research, or talk about new treatments…’ (Cathcart ME Support Group Meeting, June 2010). Unfortunately, Dr Chaudhuri was unable to attend the meeting on the 29th through work commitments; some group members tried to have the meeting postponed to another date, but it duly went ahead on the 29th with CPG convenor Mary Fee in attendance.
By the end of the meeting, the group remained in deadlock and Mary Fee took the decision that the matter should therefore go before the full CPG in order to find some resolution. Later that day our Scottish representative received a telephone call from Carol Flack, CPG Secretariat, on behalf of Mary Fee requesting that Tymes Trust prepare the voting options for the full CPG at the next meeting, the 19th September.
On the 9th September the Trust’s suggested wording was emailed to Carol Flack who then forwarded it immediately to Mary Fee for approval, prior to issue with all other CPG documentation on the 10th September. This was then sent, in its entirety, to all CPG members.
Confirmation that Mary Fee herself approved the voting options as accurate and reflective of the debate can be seen from her e-mail of 25th September 2012: ‘The options circulated appear clear and voting option 2 would appear to broadly follow the existing remit of the group.’
Democracy is the principle on which our whole society is based. The votes cast were overwhelmingly in favour of a specialist ME clinic, and it is hard to justify why this democratic vote was not accepted, whether it was popular amongst the ‘powers that be’ or not. Given that a vote was neither proposed nor overseen by the Trust, or by patient groups, but by Mary Fee MSP, who was elected under the principles of democracy, we consider that patients in Scotland have been badly let down.
It is important to remember that the ‘Myalgic Encephalomyelitis – Adult & Paediatric: International Consensus Primer for Medical Practitioners 2012’ states that lack of knowledge has allowed ‘CFS’ to persist ‘causing a web of confusion’. It goes on: ‘We believe this is the foremost cause of diluted and inconsistent research findings, which hinders progress, fosters scepticism, and wastes limited research monies.’
We would also refer readers to the 25% Group’s own account of these matters.
Lesley Scott, Tymes Trust Scotland Representative
Jane Colby, Tymes Trust Executive Director
14 February 2013
Aftermath: Shortly after the Cross Party Group closed when the vote was not accepted by the Convenor, a pilot rehabilitation clinic began in Lothian described as being based on ‘graded activity and cognitive behavioural principles […] in accordance with a bio/psycho/social model’
25% Group
ME in Scottish Parliament
Scotland: Holyrood Update Cross Party Group on M.E.
Since the last edition of the quarterly there has been a further – and what proved to be final – meeting of the Cross Party Group on ME at the Scottish Parliament. After over ten years of effort on various fronts over the course of three Parliaments, friends made, and bonds developed, this is both a sad and – in view of the circumstances around closure – we regret to say a welcome development.
At a CPG meeting on September 19th 2012 the Cross Party Group on ME was asked to vote on whether to be a Cross Party Group on ME or a Cross Party Group on ME and range of fatiguing disorders. This vote took place at the behest at of the convener and under threat of her resignation if the vote went in favour of ME.The choice put before the Cross Party Group on ME was:
To focus our endeavours on the WHO ICDJO G933 neurological disease ME or instead, choose to proceed under the umbrella term ME-CFS to include a spectrum off atiguing conditions?
These options stemmed from a sub group meeting at which the convener Mary Fee MP had been present. We understand that at this meeting the convener was unsympathetic to the view that the Cross Party Group on ME should be pressing for the establishment of a Centre of Excellence that would clearly and specifically focus on M.E. It had emerged that the sub group was divided on this point, with Lesley Scott, (TYMES Trust) Jane Giakoumakis (Lanarkshire ME Support), and Margaret Williams (ME East Kilbride) keen to see the CPG pressing for a Centre of Excellence on ME. Rather than take this specific matter to the full CPG for consideration, the convener attended the next sub group meeting. When the impasse remained she remitted Lesley to present a basis for the CPG to vote not on this specific issue but on the Cross Party Group’s remit – reflecting the discussion at the sub group.
Lesley’s Scott’s paper with the above voting options was circulated nine days in advance of the meeting. The CPG secretary had been led to anticipate that a paper by the convener would also be circulated. This has never materialised. At the CPG meeting the vote was introduced by the Convener as originating from a view on the part of some members that no one with a CFS diagnosis should be represented by the CPG on M.E. I for one felt my jaw just about hit the table at this point. Clearly Mary Fee had a very poor grasp of the situation. However, she did not propose any discussion, rather the reverse, and on we went with the vote.
The vote went resoundingly in favour of M.E. Just four votes were cast in favour of the ‘spectrum of fatiguing conditions’ option. It is notable that the convener subsequently communicated that this option “would appear to broadly follow the existing remit of the group” [message to Lesley Scott]. This came as a surprise to all of us who had always assumed that a Cross Party Group on M.E. meant just that. Sad to say that neither of the two major national ME charities supported the ME option at the meeting, choosing to abstain on the vote. Neither did MERUK stand up for ME.
Nonetheless votes for the group to continue as a CPG on ME outweighed the votes for the ‘fatiguing disorders’ option and abstentions combined. Curiously the majority, who did stand up for ME and against the fatigue lobby – including the 25% ME Group, the TYMES Trust, and many local support group representatives – have since variously been described in as a ‘faction’ and ‘certain individuals’.
Lesley Scott of the TYMES Trust in Scotland was close to the action throughout. She has commented eloquently on the emerging scenario regarding MSPs perspectives:
The MSPs are indeed very frustrated with us, but why are they frustrated? It is a frustration that is wholly fed on the fact that we will not compromise on ME being a neurological disease and accept it as part of a fatiguing spectrum, thus allowing the ‘progress’ they so desperately want at the expense of patient care.
The crashing irony is that this same CPG meeting had just been provided with feedback from the working group on GP education. The situation is hair curling: ME is occasionally mentioned in the curricula of the medical schools in Scotland, but always in the same breath as chronic fatigue syndrome, which in turn is viewed as amounting to chronic fatigue due to somatisation – therefore a ‘somatic syndrome’/’functional disorder’ etc etc… It could not have been clearer that the situation on the ground is dire: confusion reigns, much to the detriment of people with M.E.
Following the meeting many felt that the best thing in the circumstances would be if Mary Fee were to stand down as convener, as she had vowed to do if the vote went in favour of M.E. However Mrs Fee attempted to hang on and oversee a further (unspecified) vote. In the event her failure to adhere to the outcome of the vote was referred by a group of concerned CPG members to the Standards Committee, following which she and the vice conveners resigned.
We have since been treated to the eulogising of Mary Fee as an MSP who was exemplary in fostering co-operation. This is extremely hard to take in the circumstances. For example, Mary Fee had consistently turned a deaf ear to all attempts at communication from us, including an invitation from Simon Lawrence to visit the Troon office and hear about our work. If she had had the courtesy to engage then perhaps she would not have revealed such a lack of understanding of what our perspective actually is. We are similarly less than impressed by her record in responding to individual people with M.E
ED COMMENT: Several papers relating to the events at Cross Party Group are available on the 25% ME Group website.
The 25% ME Group would like to express sincere thanks to our Scottish Information Officer Carol Flack, who took on the role of secretary of the Cross Party Group at the beginning of the year and steered a highly competent and professional course throughout what proved to be a difficult period.
Carol is that rarity – a healthy person willing and available to work to secure the best for people with ME. However, she also has to earn a living! The 25% ME Group would love to be able to retain Carol’s services. But we need funds. If you might be interested in supporting us to employ Carol on time limited projects to the benefit of people with M.E. in Scotland then please contact Jane Giakoumakis on 01698-817114. Even a small monthly pledge for the period of a year could help us reach the target threshold where it becomes meaningful to engage Carol.
liME to Circulate GP info packs
In a further irony, Invest in ME were to have attended the November meeting of the Cross Party Group on MR, to speak about their sterling efforts to make a reality of a Centre of Excellence for biomedical research into M.E. Following the demise of the CPG Invest in M.E. has decided to make 25 copies of the liME GP information pack available for Scotland. The idea is to help the situation in Scotland as best they can and that education is the best way to progress and improve the way people with ME and their families are treated.
Helen Brownlie
[photo: Loy Krathong festival, courtesy of ‘Takeaway’]
