Mrs Mary Fee, Labour MSP for the West of Scotland, resigned yesterday as convenor of the Scottish Parliament's Cross Party Group on ME in the wake of the row over whether the group should align itself strictly in future with those with a clear clinical diagnosis of M.E. or those with a diagnosis under the umbrella of ME/CFS.
In a letter to Carol Flack, the group secretary, Mrs Fee wrote:
Dear Carol
I am writing to inform you of my decision to stand down as Convener of the Cross Party Group on M.E.
I have been considering this matter for some weeks now, however, the decision I have reached has been made somewhat easy for me as a result of the action of some members of the CPG in recent days.
I was very honest in my assessment of the CPG at the last meeting and therefore do not wish to reiterate my opinion here however I have been left stunned by the action of some individuals. I find this action totally unacceptable and feel that there is now no realistic chance of the group continuing in its current form as a result.
I therefore resign my position and I hope you will accept my reasons for taking the action I have today.
Yours sincerely
(Signed, Mary Fee)
In a covering note, Carol Flack told members of the group, which consists of 81 non-MSP members as well as Members of the Scottish Parliament:
Dear Member,
It is with regret that I attach the following letter, from our Convener Mary Fee MSP, which I received this afternoon.
I should also add that on 8th October another of our MSP members, Elaine Smith announced her resignation from the CPG on M.E. following that of our Deputy Convener Siobhan McMahon.
Regards, Carol
According to reports, Mrs Fee's resignation follows a vote by members of the group which was overwhelmingly in favour for the use of “WHO ICD10 G93.3 neurological disease ME”. There were 30 votes in favour, five against and 12 abstentions.
Apparently, MSPs on the group objected to being tied down in this way and pointed out that the Scottish Government with whom they would have to deal would only accept the term ME/CFS.
A large number of non-MSP members then sent an open letter to the Parliament's Standards, Procedures and Public Appointments Committee stating that, if MSPs failed to uphold the vote, they would no longer have confidence in the convenor's ability to act for those with WHO ICD-10 G93.3 neurological ME.
Mr Neil Riley, chairman of The ME Association, commented today:
I was saddened to hear of the resignation of the convenor of the Cross Party Group on ME. It is vital that dialogue between patients and politicians occurs because politicians have the means to provide substantive help for patients. The Cross Party Group provides a forum in which MSPs can receive information on ME and advance understanding of it. I do hope that the members of the Group are able to find a way of re-opening a dialogue with the Scottish Parliament. If The ME Association can do anything to assist them on this then we shall.
What a complete mess.
A vote was taken and she lost what was her preferred choice. Mrs Fee should have then done the right thing and not have caused a row by resigning.
Does this now mean that what was a legitimate vote is now thrown out because of the actions of this person? How can she have been given the power to do simply by resigning?
It appears that Mary Fee may have been part of the problem. She newly took over the XPG and then tried to change the remit to cover fatiguing conditions (as per this vote).
Why would a MSP take over to covene a group if she want to changed the remit?
What I’d like to know if how much of this is due to politicking by Action for ME in Scotland.
Mary Fee says that her husband has ME. It makes no sense that she would want him treated then at a fatigue clinic with CBT and GET?
Why would she want to change a group set up on his condition?
The remit of the XPG was G93.3 ME which would have been inconvenient for AFME.
Did they, or was it individuals with fatiguing conditions through their MSP’s trying to take over the XPG on ME?
Yes, it is a mess! It must be very difficult for people reading very selective reports and comments to make sense of what has taken place. What is certain is that the breakdown in communication and relationships within the CPG, under strain for some years, is now complete.
The CPG on ME started in 2000 with the support of a sizeable number of MSPs and with a positive outlook for achieving recognition and change for ME sufferers. By 2011, the CPG struggled to recruit MSPs as its reputation within Holyrood had sunk so low. Now, in 2012, the convenor, a vice-convenor and 1 MSP member (so far) have resigned citing the unacceptable behaviour of some members of the group, and those same members have criticised the MSPs for what they see as ‘betrayal’.
To understand the debacle of the vote, you need to understand the decline in the reputation of the CPG amongst MSPs over a number of years. Reasons for this are: failure of some members a) to engage with the parliamentary purpose of CPGs, b) obsession with definitions about ME and CFS about which MSPs are powerless to change, and c) mistrust of other members of the CPG, charities, medical professionals – all of whom were trying to deal with the realities of developments (the Needs Assessment, the Good Practice Statement for GPs) in a pragmatic way to keep a dialogue going with government and health agencies.
There is a great deal of background to what has taken place during the current session of the CPG and it would be unrealistic to describe it in any detail. Suffice to say, the dispute which led to the vote was a tipping point for both MSPs (and a number of members) on one side and a group of members on the other.
The question you might want to consider is this: knowing that MSPs were advising that their support of the CPG could only realistically be maintained if it acknowledged both ME and CFS (this did not mean no longer campaigning for recognition of ME)as this was the only pragmatic way to keep an open dialogue with the health department and medical professionals, why did the group who wanted a “ME-only” approach choose to deal with the differences in viewpoints in such a confrontational way as a vote which was effectively challenging the position of MSPs and the viability of the CPG?
CPGs are formed by MSPs for MSPs to allow them to meet with interests groups to seek ways of assisting them. If group members doesn’t want the assistance MSPs can offer, there is no obligation on the part of MSPs to continue with the CPG and certainly no right of the public to control how a CPG may operate.
There may well be a case for a ME-only remit. What is clear is that the CPG members arguing for it did not produce a reasoned argument in support of it.
This episode was never about changing the remit of the CPG away from ME, whatever has been said.
Neither AfME nor the MEA were involved in the setting up of the vote.
The inclusion of “to include a spectrum of fatiguing conditions” after ME-CFS in the 2nd option was chosen by those members (not MSPs) selecting the options and one which was not explained by them.
In the end, the demise of the CPG is a consequence of the longstanding problems in the behaviour of some members as described above. I doubt they will acknowledge any responsibility.
A vote is never a confrontational way to deal with an issue. This is one of our best democratic processes. The confrontation is coming from those who now refuse to accept the decision of the majority.
I doubt they will acknowledge their responsibility.
CFS is not a disease and only brings together people with vague similarity under a umbrella that is politically easier to weaken.
Thanks Gilbert
You state the following:
“There may well be a case for a ME-only remit. What is clear is that the CPG members arguing for it did not produce a reasoned argument in support of it.
This episode was never about changing the remit of the CPG away from ME, whatever has been said.
Neither AfME nor the MEA were involved in the setting up of the vote.
The inclusion of “to include a spectrum of fatiguing conditions” after ME-CFS in the 2nd option was chosen by those members (not MSPs) selecting the options and one which was not explained by them.
In the end, the demise of the CPG is a consequence of the longstanding problems in the behaviour of some members as described above. I doubt they will acknowledge any responsibility.”
Firstly, I am curious to know how you know that neither MEA nor AfME were involved in the setting up of the vote. Both MEA and AfME abstained from the vote so we don’t know what their views really are.
Secondly, the patients did not ask for a vote and have ALWAYS acknowledged that some patients will have been misdiagnosed as having CFS rather than ME and of the reluctance of GPs in Scotland to use a diagnosis of ME.
Mary Fee, the Convenor asked for the vote and decided the options. A very small group of patients wanted to include “an umbrella of fatiguing conditions” and they were likely the 5 members who voted for it. They were very much in a minority as the final vote was 30 for ME, 5 for ME-CFS “and an umbrella of fatiguing conditions” and 12 abstentions. A rather overwhelming vote for ME.
I am confused as to which patients you feel behaved inappropriately, those that quite rightly felt that the remit of the Group should continue as WHO defined ME or those who wanted to include a rather confusing, “umbrella of fatiguing conditions”?
It is quite true that Cross Party Groups are for MSPs as we are often reminded. It is also true that ME patients, some of whom have been ill for decades expect those MSPs to work for them, not against them. MSPs are elected to represent us. They are public servants.
I think the patients have been more than patient, waiting for the situation to change in this country. If the medical establishment and the Health Department are unwilling to accept ME as a discrete illness which causes a huge amount of suffering to both patients and their families, then the MSPs should be striving to educate them. They should not try and force an unacceptable situation upon sick and disabled PwME.
The Convenor and Deputy Convenor acted disgracefully. The Convenor threatened to resign if she did not get the result to the vote that she wanted – a vote the patients did not request. She did not like the result and tried to force another vote – very democratic!
The patients have stood up for what they believe in – after all they are the ones who are ill and intimately familiar with this devastating disease.
We have tried at all times to be courteous even though frequently frustrated. Sometimes the MSPs have been less than courteous to us.
As far as a reasoned argument for ME – Perhaps you did not read all the documentation that was provided. The 25% Group ME submitted a report on the dangers of accepting CFS rather than ME and the resulting damage that could result.
If this episode was never about changing the remit of the Cross Party Group, then I fear you misunderstood.
Until ME is used to define and categorise *only* those patients who have WHO-defined neuroimmune illness, we are going to get nowhere. I too would have voted for ‘ME’. Thirty years on from my own diagnosis (of ME), the blurring and misdiagnoses and chaos just seem to get worse. In my opinion, if the (resigned) convener wants to mix and match fatiguing illnesses then she is not helping the cause of PWME in any way. (And yes, MSPs are elected to represent us, not to force us under wildly inappropriate umbrellas of illness!)
Well said!
They should have been able to accept the majority vote on this important issue. Why vote for such people in the future if they are unwilling to abide by a democratic process?
These people clearly have an agenda and their backgrounds should be looked into.
Readers of some of the posts here (and elsewhere) might notice a paradox: the more supporters of the group of CPG members try to justify their views and actions the more they confirm the criticisms by MSPs themselves of their approach to MSPs, the CPG and their conduct within it – lack of engagement, mistrust etc
Here’s a few questions:
1. If , as Shona claims, the ‘patients’ did not ask for a vote, why did the representative from the Tymes Trust agree to drawing up the voting proposal? The document stands as evidence.
2. If the Tymes Trust, the 25%ME Group and their supporters did not want a vote, why did they vote to ensure that their favoured option received the most votes?
3. If they didn’t want a vote, why did they then insist that the vote was upheld?
4. Having backtracked about ‘CFS’ at the meeting, why did they turn down the offer of the convenor to put aside the result and vote on a new set of options in order to see if there was indeed a workable consensus?
5. If they didn’t want a vote in the first place, why did they subsequently make a formal complaint about the convenor? What did they hope to gain for the future of the CPG by this action?
6. Can these actions be justified as examples of good advocacy and representation for people with ME?
The 25%ME Group circulated a paper which consisted of a collection of quotes, opinions and emotive statements. By any objective evaluation this does not meet the criteria for a “report”.
No need for any reply to the questions. The fact that they can be asked illustrates the depth and extent of the problems within the CPG. People can judge for themselves.
There is no misunderstanding.
Your convoluted logic escapes me. Your views do not represent the majority of ME patients so I am wondering whom you do represent? What is your agenda?
The 25% Group asked me to post the following statement:
“The 25% ME Group has been made aware of the postings under the title ‘Gilbert3’ on the MEA webpage.
We are conscious that no one by the name of Gilbert has ever attended a Cross Party Group meeting, nor is there anyone of this name on the circulation list. This is no surprise given that they are so thoroughly misinformed. It is remarkable that Gilbert3 feels able to pronounce so confidently on these matters. We would not dignify this posturing nonsense with a detailed response.”
Shona. Why are you posting something on behalf of the 25% Group. Why can’t they do it themselves?
Could the reason that the 25% Group don’t want to reply is that far from being “thoroughly misinformed” Gilbert3 has a very good grasp of what happened?
Do they not realise that usernames need not be a person’s real name so that’s why G3 can post anonymously?
“why did the representative from the Tymes Trust agree to drawing up the voting proposal?”
Maybe they thoght a vote it was a good idea? Maybe they thought it wasn’t needed, but were ok with it anyway? That is possible you know.
” If the Tymes Trust, the 25%ME Group and their supporters did not want a vote, why did they vote to ensure that their favoured option received the most votes?”
So you’re saying, if they didn’t want a vote (and I don’t know what evidence you have of this) they should have voted cotnrary to their own desires?
“If they didn’t want a vote, why did they then insist that the vote was upheld?”
Um, because they agreed with the result, regardless of whether they wanted a vote or thought it was necessary?
“Having backtracked about ‘CFS’ at the meeting, why did they turn down the offer of the convenor to put aside the result and vote on a new set of options in order to see if there was indeed a workable consensus?”
Well if an authority offers a vote then refuses to accept the democratic result but instead offers a vote with different wording, alarm bells should be ringing.
I have no idea how you get from that to, the Scottish authorities did no wrong as you seem to be arguing.
5. If they didn’t want a vote in the first place, why did they subsequently make a formal complaint about the convenor? What did they hope to gain for the future of the CPG by this action?
What has their initial desire for a vote or not, got to do with the fact a vote was taken which would (should) have been democratically binding one way or another?
That’s like saying nobody who wanted a general election called should care what the results of the polls are.
They have every right to complain about the sabotaging actions by the convener. You cannot in all seriousness be an MP and offer people a vote and then throw it back in their faces because you don’t like the result, and not expect to be held accountable.
“Can these actions be justified as examples of good advocacy and representation for people with ME?”
Yes. It’s called avocacy, not rolling over and asking for a kick.
“The 25%ME Group circulated a paper which consisted of a collection of quotes, opinions and emotive statements. By any objective evaluation this does not meet the criteria for a “report”.”
No, it’s your arguing here that meets the above “fail” of any kind of accuracy, objectivity and dispassionateness.
“No need for any reply to the questions. The fact that they can be asked illustrates the depth and extent of the problems within the CPG. People can judge for themselves.
There is no misunderstanding.”
Oh yes I think there is. You expressely attempt to criticise and only criticise ME advocacy in the face of these undemocratic actions by certain parliamentarians, you have an agenda, and it isn’t for ME.
And it sounds like you didn’t want a vote either, but unike pwME you’re quite happy it was sabotaged and you bend over backwards to defend the sabotaging by deflection.
Well said Shona. I would just add that the end of the CPG was down to the convenor Mary Fee who said in a sub-group meeting that from the 2 options she asked someone to type up to save her doing it, if Option 1 which was M.E won the vote then she said she would resign. I was there!
Jane. The CPG ended because the TYMES Trust backed by 25% Group and others, put forward voting options that Mary Fee and the other MSPs couldn’t support. If that was known at the subgroup meeting why were they put forward? Did you think that she would back down?
So far from the blackmail the rep from 25% seems to think happened, is it not the case that you and others were blackmailing the MSPs?
Wrong! The Convenor put forward the voting options. The membership voted for ME.
What blackmail? Your information is incorrect. End of.
The facts would tend to argue against Gibert’s post above.
Far from the CPG failing to attract MSP’s Mary Fee walked into the job just after she was first elected.
We have yet to hear an explanation of why Mrs Fee wanted to change the remit of the group. Didn’t she read the legacy statement that said it was a CPG for ME (as defined by the WHO)?
If people with fatiguing conditions want a CPG then they are welcome to start one.
Trying to take over the ME group would rob people with ME of one of the few voices they have.
If Gilbert is correct and MSP’s were not happy with the bickering it must be acknowledged that this was due to interests of the “fatigue” group being pushed into an arena that is simply not theirs.
Accepting “fatiguing conditions” into a CPG on ME is simply not acceptable. They should open their own CPG if they need one.
The facts would tend to argue against Gibert’s post above.
Far from the CPG failing to attract MSP’s Mary Fee walked into the job just after she was first elected.
Why did Mary Fee walk into the job?? That’s because the reputation of the CPG is such that no MSPs want anything to do with it. Read Siobhan McMahon’s resignation letter. Go back and read the minutes from when CPG was set up. It was well attended by MSPs and other interested parties then you start to read of the bickering (e.g. minutes of CPG 10 Dec 2003, 17 Sept 2008, Alex Fergusson’s letter “Where to Now”) and how MSPs were put off by the “ continual discussion over the name”.
Has nothing been learned?
We have yet to hear an explanation of why Mrs Fee wanted to change the remit of the group. Didn’t she read the legacy statement that said it was a CPG for ME (as defined by the WHO)?
The Convenor said that there was a friction in the group as to what and who the CPG represented, so this was an opportunity to settle the argument. She stated that Parliamentary groups have to show that they are working together for a common purpose, be productive and be influential. Score 0/3 there. The Legacy Paper, March 2007, might say that it’s a CPG for ME but look at the Clinical guidelines section. “The Group proposes the adoption of…..Canadian Guidelines for ME/strictly defined CFS” and the WHO CLASSIFICATION you refer to should really be quoted in its correct form
ICD10 93.3 Post Viral Fatigue Syndrome with Benign Myalgic Encephalomyelitis subordinate to it. Chronic Fatigue Syndrome is listed in the Alphabetical index but there are plans to have it as the hierarchical term in ICD 11
.
If people with fatiguing conditions want a CPG then they are welcome to start one.
Trying to take over the ME group would rob people with ME of one of the few voices they have.
If Gilbert is correct and MSP’s were not happy with the bickering it must be acknowledged that this was due to interests of the “fatigue” group being pushed into an arena that is simply not theirs.
Accepting “fatiguing conditions” into a CPG on ME is simply not acceptable. They should open their own CPG if they need one.
This whole mess was started when members of the subgroup were asked to answer individually if they agreed that the CoE should be for ME ONLY. 3 wanted a CoE for ME ONLY and 3 wanted to include those that had been given the diagnosis of CFS even when they ticked all the boxes for M.E. It’s well documented that since the early 1990s, this is what the medics used. So should these people be excluded from a CoE?
For the last meeting, attended by the Convenor, both sides were to bring evidence to support their argument. The ME only group brought nothing. The ME-CFS group brought a significant amount which was and is freely available to the membership, from the Secretariat for the Sept meeting.
The ME only group wanted 2 researchers to attend this meeting but the invitations were diplomatically declined when they were made aware of the purpose of the meeting.
The ME only group were asked to agree to the use of the compromise term ME-CFS given that’s what the Scottish Gov ,NHS, researchers, medics use.
She was told that they would not move from their stance.
The ME only group were told by Mary Fee that if they thought they had the support of the CPG membership, to put it to them if they wanted the CoE to be for ME only. It was that question and only that.
So where exactly did the phrase “a spectrum of fatiguing conditions” come from”? It wasn’t from the 3 who wanted CFS included.
MERUK stated that Option 2 was a “red herring”. Was it designed to get people to vote for Option 1?
Why should CFS be included in a CoE?
CPG Petition 2001 “To establish a CoE for the treatment of and research into ME and CFS”
“To carry out a Strategic Needs Review Assessment on ME and CFS in Scotland”
Evidence for Gibson by Hooper/Williams 2005 “CFS/ME specifically and intentionally includes psychiatric disorders… dominant feature is fatigue…. Not synonymous with ME/CFS also known as Post Viral Fatigue Syndrome”
2005 covering letter from the CPG to the Group on Scientific Research into Myalgic Encephalomyelitis (ME). “the Cross Party Group is specifically on ME, though the Group acknowledges that patients presenting with the distinctive clinical features relevant to ME are rarely given this diagnostic label now. ‘Chronic fatigue syndrome’ (CFS) is the preferred term.
Ref used in 2005 Covering Letter (with key issues) of CPG to Group on Scientific Research into Myalgic Encephalomyelitis (ME);
‘Chronic fatigue syndrome’ (CFS) is the term currently favoured in medical and other official circles, and is used to encompass a broad range of clinical presentations
In Dec 2007 Shona Robinson replied to Written Parliamentary Questions tabled by Andy Kerr MSP “ What funding has been given to biomedical research into chronic fatigue syndrome and ME since 1999?” These questions were asked after Andy Kerr took over as Convenor and after the the Legacy Paper was agreed. If the CPG was only representing ME why was he asking about CFS?
Health Care needs Assessment 2010; refers to ME and CFS throughout. It says it will ” look at the healthcare needs of people with M.E and CFS.” and
“Throughout this document neither ME nor CFS are used independently apart from the defining diagnostic criteria for ME. Although the NICE criteria is for CFS, healthcare professionals are to consider the condition ME-CFS not just CFS.”
If the 25%Group were in support of ME only why did they use this in their Introduction to DSM-V submission?
“Myalgic Encephalomyelitis (ME) has been classified by the World Health Organisation (WHO) as a neurological disorder since 1969. Currently it is listed in the International Classification of Diseases (ICD), chapter 6, under Disorders of Brain at ICD-10 G 93.3. In the 1992 revision of the ICD, the WHO approved the term “Chronic Fatigue Syndrome” (CFS) as a term by which ME may be known. The term CFS is coded only to ME at ICD-10 G93.3; hence the composite term “ME/CFS” is often used to denote the disorder. A synonymous term also sanctioned by the WHO is “post viral fatigue syndrome”.”
Why were they happy to include this key message from docs they reviewed for relevance to SGPS in May 2010?
Key Message “The term ME is rarely used now in medical circles, ….. Instead, people presenting with the clinical features of ME are given a diagnostic label of ‘Chronic Fatigue Syndrome’ (CFS)….
notes that the Canadian Guidelines uses the term ME/CFS. Their definition is generally accepted as appropriate to ME by researchers and patient groups”
The result of the vote was hardly a “landslide “either Only 30 voted out of 81 = 37% or 51 DIDN’T vote for a CPG/CoE for ME only.
CPG NOW “NO LONGER EXISTS”:
This email exchange has been circulated to CPG members today (24 October 2012):
“Dear Member,
Further to my email of this morning – forwarding Jim Eadie’s resignation from the CPG on ME – I am now forwarding Sam Currie’s response to my question about how best to proceed (see below.)
I have just now spoken to Sam and have come to the decision that since it is not within my capacity to get another MSP to join the group I regretfully have to inform you that the group no longer exists.
This would, I imagine, not preclude members approaching MSPs to discuss this matter further.
Best regards, Carol
Carol Flack
Secretary
Cross Party Group on M.E.
Scottish Parliament
Dear Carol
Many thanks for your email.
The process now would be for you to try and procure one more MSP to become a member of the CPG and hold elections for office bearers. Your remaining MSP members, Marco Biagi MSP, Neil Bibby MSP, Alex Fergusson MSP and John Lamont MSP, retain the required party balance so you do not need to procure a member from a specific party.
If you feel that it is unlikely that you will be able to get another MSP member to join the Group then you should contact the existing MSP and Non-MSP members of the Group and the Standards, Procedures and Public Appointments Committee to
say that the Group no longer exists.
Should you require any further information please don’t hesitate to contact me.
Best regards
Sam
Sam Currie
Support Manager
Standards, Procedures and Public Appointments Committee
This whole sorry affair only goes to show that it is untenable to conflate ME with other fatiguing illnesses. The confusion is not sustainable or desirable, it serves no none. I blame those medics who, in the first place, hijacked ME and allowed this situation to develop over decades… I can only surmise that those MSPs who have resigned are actually unaware of what is ME and what isn’t.
miss diagosed this is highly inaccurate, will attend to this later but for now. You were obviously part of the sub-group. I was and i am not afraid to hide my name for what i have spoken is the truth and it was the fault of Mary Fee who TOLD the sub-group members there was to be a vote taken to the whole membership. The options came from her due to what the sub-group were debating. i have proof of this in emails. When she received the voting options she asked for by email , she then had 10 days to change them before having them sent out by the secretary to every cpg member but she did NOT change them as that is what she Wanted! You should be aware that AFTER the voting in an email to one of the M.E sub-group members , Mary Fee said that option to remained to be the remit of the CPG. And what was Option 2 ! It was ME/CFS an umbrella term for a range of fatiguing conditions. We can have this posted if necessary. So the convenor still favoured Option 2 which was explained in 2 emails to myself from 2 members of the sub-group. One of the fatiguing conditions members actually says in their email re what should be included in a Centre of Excellence “bring it all in and we can sort it out from there” I think this person also voted i presume for Option 2!
The only blackmailing going on was from the convenor who stated quite clearly at the sub-group that if M.E wins the vote the CPG will fold and the msps will resign. There were NO threats from the 3 members who wanted M.E G93.3,. The 3 members who wanted M.E G93.3 also accepted that we would have people with a diagnosis of cfs who did have M.E at such a centre of excellence. The so-called evidence produced by a member of the sub-group for fatigue conditions to be included quoted Greg Crowhurst and Malcolm Hooper as evidence of supporting a range of fatiguing conditions, did you know Malcolm voted for neurological M.,E at the vote! Just as he points out on the 2012 InvestInME DVD where he stands up for M.E. G93.3
The MSPs have failed to listen to the difference between M.E G93.3 and CFS and demanding a vote on this took things further. They obvioulsy thought that the CPG majority along with the 3 sub-group members would vote for Option 2. It was a landslide victory that was not upheld. At a General Election abstentions do not count and neither did they count at the CPG vote!
Agreed, Jane. I really don’t know what point miss diagnosed was trying to get across because I couldn’t understand her ramble.
Miss Diagnosed,
People with ME have been asking themselves the following question for over 20 years
“can people with CFS and people with ME work together”
The answer from your post would seem to be “no”.
At least until research is done to determine if the two conditions are always the same. Then they can hopefully work together on on items of mutual interest.
It sounds as if people with a CFS agenda have been working to undermine the XPG into ME for years.
You showed in your post a huge lack of respect towards the ME patients at the XPG.
If your writing is any indication of the “bickering” at the XPG I’m not surprised MSP’s were turned off from attending.
If the XPG reconvenes then I would respectfully ask that people with CFS and a interest in chronic fatigue stay away from the group so that it can continue to represent the ME patients who need representation badly.
Thank you miss diagnosed. I understood your ‘ramble’ & note the points drawn from the documents submitted to the CPG for the last meeting.
Thank you Jane, too, for helping to build up the picture.
Let’s take stock of what we have so far.
Miss diagnosed states that the convenor suggested putting a single question whether a Centre of Excellence should be for ME only to the whole CPG if those in the working group (3 members) thought they had support for it BUT at the same time pointed out the drawbacks for the viability of the work the CPG could take forward to government etc from the perspective of MSPs. Nothing to do with changing the remit of the CPG to include a ‘spectrum of fatiguing conditions’.
Jane & Shona claim that the convenor insisted on the vote – rather than suggested – and chose the wording of the options. They claim they didn’t want a vote.
Jane claims the convenor asked for the voting proposal to be submitted by email and, after receiving it, did not change the options, or their wording, when she had an opportunity to do so.
Shona doesn’t refute the fact that the voting proposal, the choice of options and their wording was prepared by the representative of the Tymes Trust.
So, back to my first question in my last post.
1.If , as Shona claims, the ‘patients’ did not ask for a vote, why did the representative from the Tymes Trust agree to drawing up the voting proposal? The document stands as evidence.
We are asked to believe that the representative of the Tymes Trust on behalf of 2 working group members submitted a proposal for a vote because the convenor asked for it – even though they didn’t want a vote.
2 more questions:
1. If the 3 members of the subgroup, the 25%ME group and their supporters did not think a vote was a good idea, why did they not try to persuade the convenor against a vote and offer a different solution to the disagreement?
2. Even if they were prepared to go along with a vote, if they thought the wording of the options – which they claim the convenor wanted – were not a fair choice to put to the CPG why did they not raise this matter with her and suggest something different?
The posts make clear that the representative of the Tymes Trust, the 25% ME Group and their supporters are forthright in their views and speak up for what they believe, so why not do so on this occasion?
Too bad you had problems with the logic in my earlier post, Shona. You shouldn’t have a problem with these latest questions. Or maybe it was the paradox you didn’t understand.
Jane, did you get Professor Malcolm Hooper’s permission to reveal how he voted? Am guessing not. Never mind.
What you have revealed is this: that the representative of the Tymes Trust, 25% ME Group and supporters did indeed canvass votes amongst the CPG membership including people like Malcolm Hooper who does not attend meetings and does not contribute in any other way on a regular basis – a vote they claim they didn’t want.
“Posturing nonsense”? Really?
Also Miss Diagnosed, the 2 Doctors/researchers who were contacted to attend did not decide not to attend for reasons other than personal which was told to ALL sub-group members, there was even an email from one Dr to all sub-group members saying why they could not attend, are you saying this Dr was lying? If so this is a disgrace and I am appalled. As far as producing evidence at the sub-group meeting, one sub-group member dominated the entire meeting so much that there was no time for anyone to discuss what they had brought with them.
Again I say you must have been present at the sub-group meetings, why are you hiding behind a false name if what you say is the truth? You will have received that email from one Dr who was trying to attend stating their reasons for not being able to. That sub-group meeting was a brow-beating session against the 3 members who supported M.E G93.3 to try and get them to accept all fatigue states to be included under that coding.
Thank you miss diagnosed. I understood your ‘ramble’ & note the points drawn from the documents submitted to the CPG for the last meeting.
Thank you Jane, too, for helping to build up the picture.
Let’s take stock of what we have so far.
Miss diagnosed states that the convenor suggested putting a single question whether a Centre of Excellence should be for ME only to the whole CPG if those in the working group (3 members) thought they had support for it BUT at the same time pointed out the drawbacks for the viability of the work the CPG could take forward to government etc from the perspective of MSPs. Nothing to do with changing the remit of the CPG to include a ‘spectrum of fatiguing conditions’.
Jane & Shona claim that the convenor insisted on the vote – rather than suggested – and chose the wording of the options. They claim they didn’t want a vote.
Jane claims the convenor asked for the voting proposal to be submitted by email and after receiving it did not change the options, or their wording, when she had an opportunity to do so.
Shona doesn’t refute the fact that the voting proposal, the choice of options and their wording was prepared by the representative of the Tymes Trust.
So, back to my first question in my last post.
1.If , as Shona claims, the ‘patients’ did not ask for a vote, why did the representative from the Tymes Trust agree to drawing up the voting proposal? The document stands as evidence.
We are asked to believe that the representative of the Tymes Trust on behalf of 2 working group members submitted a proposal for a vote because the convenor asked for it – even though they didn’t want a vote.
2 more questions:
1. If the 3 members of the subgroup, the 25%ME group and their supporters did not think a vote was a good idea, why did they not try to persuade the convenor against a vote and offer a different solution to the disagreement?
2. Even if they were prepared to go along with a vote, if they thought the wording of the options which they claim the convenor wanted were not a fair choice to put to the CPG why did they not raise this matter with her and suggest something different?
The posts make clear that the representative of the Tymes Trust, the 25% ME Group and their supporters are forthright in their views and speak up for what they believe, so why not do so on this occasion?
Too bad you had problems with the logic in my earlier post, Shona. You shouldn’t have a problem with these latest questions. Or maybe it was the paradox you didn’t understand.
Jane, you provided a clue which fills in some of the background details to the vote and confirms the validity of these questions when you revealed that you knew the vote of a member of the CPG who does not attend meetings or contribute regularly in any way on a regular basis.
Not unreasonable, then, to infer that the representative of the Tymes Trust, 25% ME Group and supporters did indeed canvass votes amongst the CPG membership to win a vote they claim they didn’t want.
“Posturing nonsense”? Really??
Gilbert, there was no need to canvas any votes as you put it, the membership have minds of their own and decided that they wanted to vote for M.E. Everyone that is a member is on the email circulation list, receives all the emails and is entitled to a vote. People wanted a cross party group on M.E and not what 3 members and the convenor wanted which was a CPG on fatiguing conditions. The convenor demanded a vote and one supporter of fatigue conditons within the sub-group agreed with the convenor when she told us all there would be a full membership vote. None of the supporters of M.E agreed with her. 22 people signed the letter that went to the standards committee after Mary Fee failed to uphold the vote she demanded. This cannot be referred to as a few individuals. And i suggest watching the 2012 InvestInME conference questions session where Professor Hooper states openly to the public his commitment to M.E and why he dismisses CFS.
The basic line here is that the 3 sub-group members who wanted CFS and to include a range of fatiguing conditions thought they would win the vote and they lost. Now they cannot handle the consequences of their actions and are trying to place the blame onto anyone but themselves!
These 3 had ample opportunity to say to Mary Fee during that sub-group meeting they didnt want a vote but they failed to do this and as I said one of them verbally agreed with Mary Fee. One of them detailed all the fatigue conditions they wanted to be included in a Centre of Excellence including chronic fatigue “with and without psychological problems” , linked to this email was a further email from a 2nd sub-group member and supporter of fatigue conditons who said “i agree with xxxxx”.
That sub-group member also told us during that last meeting that “it’s a game” and “we have to play the game” re with the government. Well it wasnt a game, it was the lives of very ill people with M.E which the majority voted to help.
During the sub-group meeting Mary Fee said it was a CPG on ME/CFS. When she was corrected on this she then said “we will have to sort that then” This is where she obviously decided that the remit of the CPG should change and be voted on.
Mary Fee should have taken discussions to the whole CPG before demanding a vote. Every member of the CPG should have been able to participate in this discussion. Not just 6 sub-group members. But then we know she does not believe in democracy! I did think MSPs were there to ensure democracy.
OK, Jane, now you are contradicting Shona.
Shona said in a post here that the “patients didn’t ask for a vote”. You are saying here that “the membership have minds of their own and decided they wanted to vote..”.
As you know, votes could be sent electronically to the secretary. If members chose to vote this way, can you explain how you would know the voting choices of individual members, particularly those who have no regular involvement like Professor Hooper? Unless, of course, you have been in contact with them – evidence which points to canvassing for a vote you wanted to win rather than one you disagreed should take place.
As for the letter to the Standards Committee. This was not circulated to the whole CPG membership. If 22 names signed this letter then it can only be concluded that the 22 names were a group targeted for their support by the Tymes Trust representative, 25%ME Group and their supporters, like yourself.
You are making this so easy for me, Jane, to expose the lack of credibility in your arguments.
Note that no one has answered any of my questions!
“You are making this so easy for me, Jane, to expose the lack of credibility in your arguments.”
Why are you taking this officious, pseudo-“investigative” approach? Who are you to “expose” anything about anyone’s arguments? Your own arguments will be undone by such superciliousness.
I haven’t seen evidence of anything from you except a wish to demean patients/sufferers/advocates and do the old high-handed “I know better than all of you” arguing approach that’s typical of an agent provocateur, or those who appear happy with the status quo.
I have recently been informed of this strand and have never got involved with any other discusssions but feel that the misinformation from Gilbert3 and Miss Diagnosed is doing nothing for their cause, let alone that of ME.
I think it is time for this unhelpful discussion to come to an end. The time for discussion should have been at the last CPG, where the whole group should have been able to decide about the ballot, which was initiated by the Convener. We as a sub group (6 people ) cannot speak for the main group
The reason that the CPG closed is because 3 MSP’s ( Convener and 2 Deputy Conveners ) would not accept the the outcome of the democratic vote of members
I do hope you have managed to read the document given out at the last CPG re the training of up and coming Doctors which to my mind shows the need to seperperate ME from CFS most clearly.
Gilbert3 Are you a patient with ME? Somehow, I don’t think so. Are you a carer for someone with ME?
Miss Diagnosed seems to be the only one that understands your tangled arguments and vice versa. They are tangled with obfuscation, prevarication and misinformation. What is your motive? What is your interest in this matter? Are you a member of the Cross Party Group? If so, why are you casting aspersions on the majority of the members who do not share your views?
I don’t really want to continue to waste energy on this discussion because I’m really not well.
I would like to say, however that the 25% Group have not responded to your tirade because the staff are all very busy dealing with the realities of patients living with severe ME. The ones who are left in their beds in a dark room with no medical treatment. The ones who know and understand what a devastating and dangerous illness ME can be.
The Tymes Trust are busy trying to help distraught parents who are fighting against uncaring government agencies and the ignorance of the medical establishment who might try to take their sick child from them.
Those are the people you should be concerned about, not your own ego or vested interests because you lost the debate.
The facts of the matter are these:
The membership was asked to vote.
They voted.
The majority decided to support WHO defined ME.
You lost.
Get over it and let us have some peace.
Gilbert/sub-group member. YOU have never answered any of the questions , we have. Finally, i was contacted by Professor Hooper on another matter and was asked to add his vote. You may find it hard to believe but some of us with M.E have contact with Dr’s interested in M.E. As Shona points out. A vote was demanded by the convenor, we voted for M.E as advocates for those suffering this terrible disease. You lost the vote, it is time to get over that loss and be happy for people with M.E who do have people willing to stand up for them!
Margaret has suggested this discussion should end. Maybe we can agree on this, at least.
Whether it has been helpful is for ME sufferers outside of the CPG to judge.
Some loose ends:
Gilbert3 has not commented on his/her identity, state of health or connection with the CPG for what should be very obvious reasons. If not, content and tone of language in some of the posts here are a clue.
Gilbert3’s agenda?
Nothing to do with the loss of a ‘vote’.
Everything to do with the accountability of the Tymes Trust representative, the 25% ME Group and their supporters within the CPG for their brand of advocacy – their words and deeds which they claim are in the best interests of people with ME.
The loss of MSP support over the years for the CPG through their failure to engage with its parliamentary purposes, the undercurrent of – and often, open – mistrust at meetings, their recent actions taken against the convener of the CPG, their posts here and the questions about accountability put to them –still unanswered – are testament to this ‘advocacy’.
People with ME can weigh up the versions of recent events and come to their own conclusions.
OK, I’ve been persuaded that my earlier wish to close this correspondence was a little bit premature. If anyone wants to contribute further to this discussion, please do…
Tony Britton, ME Association
30 November 2012
Tony here is a major new fact! When Mary Fee took on the position of convenor for the M.E CPG, the 25% M.E Group wrote to her on numerous occasions asking her to engage with them!!!! What did she do? She ignored them and did nothing! Also many other CPG members tried to engage with her and other MSPs, I sent many of them, paid for from my own pocket, copies of Kay Gilderdale’s books and copies of Voices from The Shadows! Also many research articles etc on M.E. The only charity that Mary Fee chose to engage with was Action for M.E who were invited to private meetings while other charities were not given invites! Facts Gilbert, pure Facts! What evidence do you have Gilbert to substantiate that these charities and others failed to engage with MSPs? And why the anonymity, what are you hiding? I say again, Mary Fee asked someone from TYMES trust to draw up Mary fee’s proposal to save her time from doing it. It could have been any one of us that she asked, as i said, to save her doing it. Mary would not have asked anyone to draw it up that she didnt trust! Mary also had 10 days to change it if it wasnt what she originally wanted. The 3 fatigue supporters didnt ask for it to be changed either because Option 2 was what they wanted! End of.
Jane has explained what she understands by ‘engagement’.
A paper was circulated by 3 members to the wider CPG in reply to the voting proposal in which the subject of engagement is explained. For the benefit of those who have not seen it:
“By engagement we mean an understanding of what a CPG is for; of how to work in partnership with MSPs who are members of the group; of how to share our knowledge with them and of how to listen to their guidance on how to achieve the aims of the group.”
and
“Engagement also encompasses an understanding of the areas of accountability to which public and professional bodies adhere. The allocation of public money is one example. In the case of funding for a centre of excellence, is it likely that either central government or health providers would justify a ME-only centre? How would they defend the inequality of treatment to those diagnosed with CFS? Having campaigned against the unequal treatment of ME-CFS patients can we expect to have any credibility with those in the health department and the medical profession we might seek to influence if we now argue for a centre of excellence which advantages only some from the ME-CFS group?”
So ‘engagement’ is all of this – and at the same time advocacy for ME sufferers. A complex balancing act indeed.
Note that in this paper the 3 members make it clear that they did not support the second option of “a centre of excellence for ME-CFS, to include a spectrum of fatiguing disorders”, as here:
“However, the second choice, as proposed in xxxxx’s statement, is not an accurate reflection of the views we put forward to the group.” [Name removed]
Jane refers to the convener’s ‘trust’ in the Tymes Trust representative to prepare the voting proposal. Given her and the group within the CPG’s subsequent actions, a trust they proved they didn’t deserve, by any objective assessment.
Gilbert 3 – Everyone who has commented has been quite clear that they are patients with ME, except you.
Your lack of understanding and compassion for those with ME leads me to believe you are not a patient at all.
The tone and language of your postings and your reluctance to explain your interest in the CPG would suggest that perhaps you are protecting your own interests in wanting a wider remit for the CPG on ME.
Could you possibly be someone who works for a charity other than the 25% Group or the Tymes Trust or maybe the NHS? If so, all becomes clear.
The membership voted for WHO defined Neurological ME, a discrete, seriously debilitating, sometimes fatal condition. We did not vote for the misnomer CFS and “an umbrella of other fatiguing conditions.”
We are aware that some people have been misdiagnosed with CFS and have no desire to leave them out in the cold. Far from it, we want the medical profession to be better educated in Scotland about ME so they will be able to make a correct diagnosis and give patients the care they need, not just CBT (of dubious merit) nor the potentially dangerous GET.
So many people have been irreparably damaged with theses therapies. It is long past time for biological, not psychological research into ME and hopefully, work towards a cure.
If your life and that of your loved ones had been ruined, you would understand.
Shona, I don’t think Gilbert has ME either, his responses are so persistent and long, I doubt anyone w ME would have the stamina. Not being churlish, just saying it as I see it. I find it all quite hard to absorb, cognitively, but then I have neuroimmune illness, not a vague fatigue state.
Agreed, nmj! Thank you! Obviously, he doesn’t understand the cognitive difficulties of those with ME.
It is exhausting just trying to read/understand. I’m away for a wee lie down now.
PwME can have adrenalin rushes, use caffeine/sugar, have an unusual good day/period, split long things up, write lying down, etc. Energy can be “stolen” from regular activies if something is deemed important enough – something that the “redefining recovery” subjective CBT snapshot walking test research doesn’t consider! And cognitive dysfinction can make you un-concise, and a long period of exacerbation can leave you with a lot unsaid.
But I agree, it’s plain that gilbert is “not we”. His postings positively drip with disdain for sufferers. He’s more than welcome to undo that impression but he’ll find it an uphill struggle now, and whats more I expect he doesn’t care.
Thanks for speaking sense NMJ, Shona, Jane et al!
Well said Shona and nmj! You understand M.E well. Pity Gilbert cannot see the inequality of care for people with M.E that exists in Scotland. The 3 sub-group members DID want all fatigue conditions included, i have that in an email. part of the description used by a sub-group member in one email states to be included in a centre of excelence would be “chronic fatigue with and without psychological problems” I quoted that email at the full CPG and invited anyone there to have a look at it. Following on from that email and linked to it was an email from a 2nd sub-group member saying they agreed with that person. Again I say those 3 fatigue sub-group members did not dispute the proposal. The teaching document obtained under a FOI that was given out at the last CPG makes it clear why we need to separate from CFS. CFS requires its own clinic. Those that are given the lable CFS but who have M,E would also be included in a M.E Centre of Excellence. The MSPs should have listened to the majority of the membership and their reasons for sticking with the term M.E but they chose to listen to a few individuals including AFME. Why won’t afme change their name to Action for CFS is one question I asked Sonya Chowdhury when at the last meeting she tried to have us accept the term ME/CFS as a new name for the CPG.
Before the 3 M.E sub-group members entered the room for that last sub-group meeting it was clear that Mary Fee had been discussing what she would do if the 3 M.E members wouldnt back down. It was obvious she had told 2 of the fatigue members that she would take it to a vote with the added threat when she said “and if M.E wins, the CPG will fold” It was what the fatigue group wanted because they thought they would win and got a shock when they didnt, it back-fired on them. The venue for that sub-group meeting was not suitable for patients with M.E as there were more than a dozen steps to get to a toilet and no lift. One M.E sub-group member is on crutches and yet the fatigue member who booked the room was more concerned that the venue offered us tea and coffee so it was in their eyes a small sacrafice to make ! This shows clearly the extent of their lack of understanding of the illness.
We vote MSPs into powerful positions to listen to what the needs of people are and to act on behalf of the people to obtain results that will make healthcare better. We tried to do this for people with M.E but the MSPs failed us when they refused to stand up for M.E. Chronic fatigue is not M.E just as Chronic cough is not TB. Sadly there are supposed M.E patients and M.E health service workers who remain to not understand the difference. They do not have the insight that by accepting a spectrum of fatigue conditions would only place us where England are now, Fatigue clinics, that is what we would receive. Clinics that have contributed to the deaths of people with M.E. We already have 3 services within lanarkshire and Glasgow who offer services for CFS and none of them work for patients with M.E. The patients that have rang me about these services only tell me about the damage caused to them through attending such services. One woman had to be wheeled out to her friend’s car after being placed on an exercise cycle. Another woman on crutches was so sick of being told her M.E was in her head that she sought help privatlely. I could go on and to know this is what is being taught to our Medical Students in Scotland, that the illness is psychological. One young boy in the East coast of Scotland was a few years back given an exercise plan to follow and his mother told that CBT and antidepressants were “gold star treatment for M.E” by a visiting health care worker. That young boy lies presently in hospital, seriously ill, he was admitted in a blue-light ambulance a few days ago. Shame on that health-care worker and shame on our MSPs at the CPG that have failed us!
Very well said, Jane!
Because of technical problems Miss diagnosed has asked me to forward the following:
Jane, you assume that I was a member of your group but then say that my account is inaccurate. Why? Is it because it doesn’t tally with your version? Jane, if that’s your name. How accurate are you? I assume that you are the same Jane that posted on a local forum in response to the MEA reporting the disputes in the subgroup, stating that at least 6 people had all posted their factual version of events and that they all corroborated each other. Fact; there were 7 people at that meeting. Fact; 4 people haven’t put anything on this forum. Fact; that only leaves 3 circulating their version. Where did all the others come from?
You also say that the 3 M.E G93.3 members said that people with a diagnosis of CFS but truly had ME, would be acceptable at your CoE. Firstly, if these people had already been diagnosed with CFS then they wouldn’t be referred to the CoE. Secondly, if you and the other 2 were happy for CFS patients to access the CoE, then why did the other 3 members have to put forward an argument for CFS inclusion? Having read the emails I cannot see where you get the idea that “fatiguing conditions” were also to be included. I do see that you seem to be confused over what is Chronic Fatigue Syndrome and Chronic Fatigue. The selective quotes you mention from emails are taken out of context. Perhaps if you ask the people concerned, they might allow you to post them in full. Maybe you could also quote from your own emails that state you would include CFS patients.
Having looked at the “so called evidence by a member of the sub-group for fatigue conditions”, where do you get the idea that the 3 others wanted “fatigue conditions” included? The evidence is a series of references supporting the use of the term ME-CFS. The same two conditions that you said would be allowed into the CoE.
Unfortunately I don’t have a copy of the DVD you mention where Prof Hooper stands up for ME. I did notice that you inaccurately wrote that it was the 2012 InvestInME DVD instead of Invest in ME International ME/CFS Conference 2012 DVD. Did you not want to mention the CFS part? Going online, there are plenty articles about Professor Hooper. In his Briefing Notes in the Update on the PACE Trial MAY 2012, Part 2 is “Essential Background information about ME/CFS” and all the articles he writes with Margaret Williams e.g. Magical Medicine, More evidence of inflammation in ME/CFS, Statements of Concern about CBT and GET provided for Judicial Review and even a letter dated 18 July 2011 to The Rt Hon Iain Duncan Smith MP. All contain the term “ME-CFS”
A few small points from your last post. The Convener didn’t draw up the vote because it would “save her doing it”. She directed the question to the TYMES Trust, MEEK and Lanarkshire ME Support Group reps : “if you think you have the support of the CPG for a CoE for ME ONLY, put it to the vote”. It was your vote, and unfortunately choice of wording.
You assumed that the 3 non-ME only members voted for Option 2. Why? You know that they wanted a CoE for ME-CFS but NOT fatiguing conditions. An addition to the voting proposal suggested by yourself to the TYMES Trust rep? Was there anything in their response to the TYMES Trust rep that could be construed as wanting, as you say “a bucketful of illnesses”?
At the end of the day you got what you wanted. You were the one that put the question to the subgroup asking if they believed that the CoE should be for ME only. You got the result you wanted and the vote was upheld. That’s why the MSPs resigned. Again it wasn’t a “landslide”.
I didn’t count the abstentions.
Option 1 = 30 Option 2 = 5 12 Abstentions. 81 possible votes.
Option 1/ 81 = 30 votes out of 81 = 37% voted for ME-only so 63% didn’t.
On a final note.
You claim to speak up for M.E. patients. Your views are limited and outdated. The rest of the world has moved on from debating terminology. Look at the way the worldwide forums have been commenting on this debacle. As a person who is struggling with M.E, a person who you and your supporters presume to speak for, I would prefer that you didn’t. As you would say, “ End of.”.
Nmj and Shona. If you think that someone with ME is incapable of writing something as long as Gilbert3, ask Jane to forward some of her emails!
Thank you Shona ,nmj and Jane,
I had hoped that Gilbert3 would act on my suggestion to close the discussion but continues to vent his anger at ME patients when the closure of the CPG on ME was caused by 3 MSP’s resigning.
Gilbert3 speaks of engagement……when did we see engagement toward us? We were expected to be yes men!
Over the previouse 11-12 years ME patients and politicians have worked to improve the understanding of ME through the CPG for ME.
Had we not been present our SPG guidlines would be saying ME/CFS code was WHO F48.(Mental Health) We would also have MCN’s led by therapists when what we need and have asked for was a Consultant led service under the correct dicipline…..Just like every other Illness.
Instead we have MSP’s plus one charity or possibly 2 charities determined to ignore moderate -severe ME sufferers and are willing to give us inapproriate services suitable only for mild ME and CFS.
The teaching info clearly shows that ME/CFS is being taught under mental Health but they don’t seem to understand or care.
I could say so much more if I was well but will finish in the hpoe that this strand will now come to an end
Margaret
The only “mess” here is the indefensible travesty of Scottish democracy.
“gilbert3” seems to have the knives out for pwME advocates and has made up his mind which side of the fence to sit on with a good helping of bias and untruth.
Cue much use of the weasel word word “pragmatic” — I remember GPs using this word incessantly while blocking my attempts to get personal care and disability benefits and appropriate investigations. What was “pragmatic” was the local “CFS” fatigue clinic which recommends CBT/GET as utterly safe as there are “no abnormalities”, and openly blaming me for generating the disease. Pragmatic is code for let’s keep everything the way it is and keep doing the same thing, somehow things will suddenly get better magically, and if they get worse, individually or generally, well there’s always more blame.
Since when was a democratic vote “confrontational”?! That’s one of the most twisted things I’ve read. Shame on you, Gilbert3.
MSPs are supposed to be there to represent the views of their constituents, not tell their consistuents that their advocacy is verboten and that they must accept MSPs’ opinions instead.
That sounds like a serious human rights violation, but we’e used to these aren’t we.
Nice job on trying to spin what’s just another stitch up into something that’s the fault of ME sufferers/ advocates. What is your interest in this disease (or “CFS”) I wonder?
There’s only one bunch of people who should look bad — those who threw their toys out of the pram at the result of the fair and democratic vote — Mary Fee et al. Shame on them. But anyone who doesn’t want a democratic vote sound like they have something to hide.
On the other hand the advocates have stood fast and have everythign to be proud of. The job of a good advocate is to in every way possible put the person/principle they’re advocating for at the top of the agenda; there is more than enough willing to do the opposite and don’t need any help.
Carers of severely affected pwME must know this too well as do those severely affected.
Democracy is dead in Scotland but we already knew that (anyone for golf?).
A vote for “CFS/ME” would mean going the same way as England with a network of psychiatry-tutored, redefining, functional somatic syndrome based, CBt/GET pushing, deceitful “rehabilitation” harm pushing, fake recovery claiming, trivialising, psychobabble-research farming, status quo perpetuating, meddler-magnet, biopsychosocial clinics that are disastrous for people with genuine ME.
An ME “centre of excellence” can ony be about one thing – ME. There are already comparatively tons of services to support mental illness and the other misdiagnoses comprising “CFS” need to be assessed on merit, not hidden under a “CFS/ME” centre whitewash.
Sorry if this is too painful for some to hear, but it’s the only way forward for people with ME, tough if it ruffles the anti-ME feathers.
AfME has been taking this broad fatigue approach and ended up actively supporting things that harm ME and hold back ME advocacy while presenting a trivial or distorted image of ME and the grim reality of living with ME. We’ve had decades of the astroturf charities nodding-smiling-and-parotting approach to advocacy which has helped to get us into this disenfrachisement.
It is obvious Gibert and miss diagnosed are never going to give an accurate account of what happened. However we have and we have nothing to hide that is why we have been so honest. Mary Fee did not ask the 3 M.E supporters if they felt the CPG would vote for M.E. Mary Fee told us all there would be a vote and a fatigue member even agreed with her! Mary Fee did not direct the drawing up of the proposal at 3 members she looked at one member using their first name and asked them to do it for her. CFS is a term as most people are aware except for you both apparently, used in England and in order to have research published. It does not mean that CFS is M.E. People who do have M.E will understand that. If professor Hooper knew that you were trying to say he agreed M.E and CFS were the same thing, he would quickly inform you otherwise. As I say buy the 2012 Invest In ME DVD and watch the question session chaired by Ian Gibson. It can be ordered online very easily and paid for via paypal. Professor Hooper’s statement is just before the person who asks the final question.
2.13pm 1st November 2012
This discussion is now closed.
Tony Britton, ME Association