“Infighting”, “bickering” and “squabbles”?

May be reposted

“Infighting”, “bickering” and “squabbles”?

No matter that the arguments have been reasoned and the objections politely expressed, there are a few within our community who are ascribing the terms “bickering”, “squabbling” and “infighting” to the sense of outrage that has been voiced around the internet in response to the publication of the Countess of Mar’s letter, last week – a letter sent not only to RiME but also to others.

They seem intent on undermining the level of concern being expressed about the tone and the content and the implications of this letter by portraying these considerable concerns as though they were nothing more than the sniping and pinches exchanged between fractious siblings on wet November Sunday afternoons. The so called “bickering” and “squabbling”  is evidence, they claim, of a “lack of unity”  within an ME community that has now gone on“the attack” against one of its own.

It is the Countess of Mar’s views and opinions on the NICE “CFS/ME” Guideline and its blanket recommendations for CBT and GET that are being challenged.

It is her views and opinions and their implication for her chairing of private meetings with selected organisation reps to discuss “issues of common concern”  that are being questioned.

It is her views and opinions and their implication for the Judicial Review and the proposed APPG “inquiry” into NHS services that people are worried about.

It is her views and opinions in the context of patronage of four ME organisations and in relation to her role as an advocate that are being scrutinised, and also her relationship with AfME.

But Lady Mar, herself, is not being “attacked”.

Some are questioning whether the Countess’s continued role as a Patron to these organisations is tenable.  Others have said they are disinclined to continue to support these organisations financially while their position on this issue remains unclear.

The 25% ME Group has already issued a statement. We wait to see whether and how ME Research UK and BRAME will respond.

In May, this year, the ME Association and The Young ME Sufferers Trust issued a joint public statement rejecting the NICE Guideline G53 as being unfit for purpose and setting out their positions on GET following AfME’s call for more GET therapists. Do these two organisations also plan to issue a statement in response to the Countess’s views?

People have been shocked and dismayed by the Countess of Mar’s opinions; saddened and bewildered by her position.  They feel badly let down; there is a sense of “betrayal” and they wonder just how in touch she really is with the reality of our situation – these are all valid concerns.  But they are not “attacking”  Lady Mar. 

Those who have responded publicly to this development as being indicative of a volte-face on the part of the Countess or of a lack of real understanding, object very strongly to legitimate and temperate expressions of concern being portrayed as ad hominem attacks and the debate and discussion the issue of this letter has generated being portrayed as “infighting”, “bickering”, internecine “squabbling” or evidence of a “lack of unity” .

Greg Crowhurst is one of those clearly finding this development very difficult to cope with.  He has put out an emotional personal commentary in which he has ripped frenziedly into the ME community at a time when many are still feeling raw and vulnerable and suggests that this development should be welcomed as a timely kick up the arse of a recalcitrant group badly in need of self-discipline that is trying the patience of parliamentarians. 

But Crowhurst fails to declare that he is also a member of the Management Committee of the 25% ME Group. Did he sign up to the 25% Group’s position statement?  As a Trustee of the 25% Group, should he not have clarified first how he stands on this Countess of Mar letter issue, himself, before he let rip?

The portrayal of the ME patient community as a hostile, petulant, irrational, confrontational, needy, infighting, intimidating group incapable of communicating their needs in a rational and moderate manner, whose behaviour discourages researchers, clinicians and politicians from getting involved in the field and results in the reluctance of some organisations to operate transparently has been peddled down the years by certain psychiatrists and psychologists, by those responsible for drawing up job descriptions for CFS clinic therapists, by Professor Peter Denton White assisted by AfME in their Summit Report, by Vivienne Parry and PRIME and by the media.

Now Crowhurst and others within our community are at it, too, but this has not gone unchallenged.

It is a construct perpetuated by Dr Ian Gibson in his BMJ journal paper and by the panel of the GSRME in their “Gibson Inquiry” report.  We’ve seen it from the MEA’s Dr Charles Shepherd, too.  In the last few days, Dr Derek Endlander has sought to suppress constructive criticism of the views and opinions of an individual whose status within parliament should not be used as a shield to protect them from scrutiny. 

Greg Crowhurst must find other, more acceptable ways of assuaging his own discomfort for the developments of the last few days.  Setting out his own position on this issue would be a good start.

Suzy Chapman

23 November 2008

The Countess of Mar: Margaret Williams 22.11.08

Ed: On 20 May 2008, Dr Ian Gibson MP, in a position statement to Suzy Chapman, wrote:

“I do not support the NICE CFS/ME guidelines. I feel they are detrimental to patients and that they fail to consider the relevant evidence about the illness… I am confident the DOH and the ME community is aware of my position on the guidelines given my previous public comments and ongoing correspondence over a number of years.”

The statement issued by the 25% ME Group on 21 November referrred to in this commentary by Margaret Williams can be read here on ME agenda

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Permission to Repost

The Countess of Mar
 
from Margaret Williams               

22nd November 2008
 
 
There has been much comment on the letter recently sent out to numerous people by the Countess of Mar, one particular sentence of which was: “I am greatly saddened that there is so much hostility to the NICE Guidelines and, specifically, to CBT/GET.”
 
I am in possession of the full letter sent out by Lady Mar, which also states: “The whole point is that CBT/GET are not compulsory.  At the moment there is no other universal treatment.  Might I respectfully suggest that you read the NICE Quick Reference Guide carefully and, instead of vigorously opposing everything in them, you use its contents to empower people with ME to negotiate the best way forwards for them with their medical practitioners.  This is my position.  I hope it clarifies matters for you”.
 
I have been contacted by many people – by email and by telephone — inquiring if the letter really did originate from Lady Mar and if those can possibly be her views.  People are shocked and distressed; they have compared her political lifetime’s staunch support for the ME community, and especially her robust calls for biomedical research, with her current public support for the NICE Guideline on “CFS/ME” that recommends the national implementation of CBT/GET.
 
People felt there was now no hope if the Countess of Mar had “changed sides”; all felt betrayed and bewildered. 
 
People were adamant that if Lady Mar remains as Patron of the various ME charities, then those people will cease to fund-raise for the charities. Someone who had just raised over £400 for an ME charity could not countenance sending the cheque. One person who contributes financially on a regular basis to an ME charity of which Lady Mar is Patron felt unable to continue doing so.  The despair was tangible.  People have commented that “she has shot herself in the foot” and are anguished in case her recent pronouncements might endanger the forthcoming Judicial Review of the NICE Guideline.
 
It is with profound sadness that, having spoken directly to Lady Mar about her letter, I can confirm that those are now her views and that she said she will not change her mind. 
 
She does sincerely believe that the patient with ME should be in the driving seat and should be able to negotiate with the clinician about whether or not to undertake CBT/GET, as stipulated in the NICE Guideline.  Perhaps because of her own experience (where she is treated with respect and generosity by consultants), she seems unaware that, for most non-private ME patients, such a partnership is unattainable in practice.
 
For the avoidance of doubt, the 25% ME Group for the Severely Disabled (of which Lady Mar is Patron) issued a Statement on 21st November 2008 confirming their position, namely that they maintain that the NICE Guideline on “CFS/ME” is not fit for purpose (a view known also to held by the ME Association).
 
The Statement notes that Lady Mar’s faith in a “working partnership” between ME patients and clinicians is not borne out in practice.  The Statement is clear: “We support the Judicial Review into the NICE Guidelines on CFS/ME. For people with ME, these Guidelines are not ‘a way forward’. All people with neurological ME can be assured that we do not support the view that CBT and/or GET is an appropriate treatment for anyone with ME”.

CONSPIRACIES AND BETRAYAL: Is NICE really nice? Gurli Bagnall

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From: Gurli Bagnall

Countess of Mar

CONSPIRACIES AND BETRAYAL: Is NICE really nice?

Gurli Bagnall

*….Not another conspiracy theory? The cry will go up as this book hits the shops. It will be heard especially from the smart commentators and senior politicians, who will exude an air of experienced superiority over the naive and gullible who dare to give the time of day to anything the politicos sneeringly call a conspiracy theory. It is the new insult from the established classes…*

Opening paragraph of the Preface in: The Strange Death of David Kelly by Norman Baker MP

Norman Baker is a brave man.

He dared to blow the whistle.

During the last decades the behaviour of which he speaks, has become increasingly prominent. We see it in nearly every aspect of society as the powerful flex their muscles and serve themselves before serving those who elected them to office.

The above quote came to mind as I read the extract from the letter to Paul Davis from the Countess of Mar. God alone knows, as sufferers of ME, we are on the sharp end of the stick when it comes to such accusations.

The Countess of Mar’s switch in allegiance seemed incongruous and before making any comment, I made it my business to seek information from other sources. I was assured that everything I had read was true.

From seemingly every quarter in the UK, the sense of confusion and despair comes through loud and clear. Lost to us, is the person of integrity and intelligence we believed the Countess of Mar to be. As a friend, she spent years fighting fearlessly in our corner with an understanding of the issues from a personal perspective and from her investigation into behind-the-scenes shenanigans.

The Countess of Mar’s actions leave a bitter taste.

Where her energies had once been spent championing the human rights of ME sufferers, those energies are now devoted to the cause of those she once reviled and those who have set themselves on a course with the destruction of ME victims in mind.

As to her motives, we can but surmise. That which we can be certain about, it that this is no theory. It may well be a conspiracy; it is certainly a betrayal – a betrayal that will doubtless add to the many hardships the ME community already live with.

Now more than ever, we need to remember a number of things.

Never underestimate your own intelligence and common sense. Remember the iatrogenic statistics as far as they are known, and do not accept explanations of being mentally disturbed. Such diagnoses are not made for your benefit, they are made for the benefit of the so-called diagnostician.

The Countess rightly points out that CBT and GET are the only universal treatments officially on offer; the implication being that we should therefore accept them. If you were told that the universal menu for the evening meal was a delicious bowl of DDT, would you eat it?

Within living memory, the universal treatment for asthma and even epileptic seizures, was a smart smack in the face usually delivered by the (old school) battle-axe of a hospital sister or matron.

Very recently, an attempt was made to bury the discovery that peptic ulcers are mainly the result of a treatable infection. Universal treatments were far more profitable, but they resulted in a great deal of damage. Years on a bland diet and antacids destroyed the digestive system; sheer neglect resulted in perforations, internal haemorrhages, unnecessary surgery and sometimes, death. As for CBT-.those demeaning lectures on an inadequate personality?..

Can the medical profession be trusted to get it right; to behave ethically; to treat you with the respect you deserve, to do no harm etc etc.. (The only statistics available are hospital records and they alone show that one third of diseases, disabilities and deaths occur as a result of preventable medical error.)

Remember the wording used in the recruitment of therapists to administer CBT/GET at the CFS/ME clinics around the UK, and know that the main (figurative) requirement was a stout pair of jack-boots.

Conspiracy theory? The denials, rejections and silences surrounding the results of genuine research into the physical causes and effects of ME, are not theories. They are fact and without doubt, conspiracies.

How can the Countess justify her actions?

Gurli Bagnall

Patients Rights Campaigner

22 November, 2008

Countess of Mar: Comment from Dr Derek Enlander

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From: DEnlander@aol.com

It is sad to see this infighting.

The noble Countess of Mar has been a staunch supporter of ME for two decades, both from the stand point of patient care and in physical research.

I am sure that the recent upheaval has been due to a misinterpretation of a recent statement.

We should be in support of our advocates and not attempt to demolish their reputation.

Derek Enlander, M.D., M.R.C.S., L.R.C.P. (Lon.).

Statement from the 25% ME Group

PERMISSION TO REPOST

STATEMENT FROM THE 25% ME GROUP   www.25megroup.org

Support for Severely Affected ME Sufferers

21st November 2008

Due to the recent postings on various Messageboards regarding The Countess of Mar’s recent statements, we would like to issue the following official statement to the ME community:-

We support the Judicial Review into the NICE Guidelines on CFS/ME. Why? Because we want the BEST for ME sufferers, not second best!!

One year ago the 25% ME GROUP released a statement about the release of the NICE Guidelines: “NICE issued their Guideline for doctors in August last year amid protests from patients and medical researchers that they had not followed correct protocols in producing the Guideline. Patient groups fear that some patients could be pressured into accepting treatments which at best may be useless and at worst could cause real harm.”

The 25% ME Group is even more of the opinion the Guidelines are ‘not fit for purpose’. We are also getting feedback from members that they are being told by their GP and/or consultants, that they are relying on the NICE document to guide them regarding providing treatment for the condition. i.e. CBT and GET.

The, so called, ‘positive elements’ of the Guidelines i.e. “Working in partnership with the person with CFS/ME”; “the right to refuse or withdraw from any component of their care plan without this affecting the provision of other aspects of their care or future choices about their care” etc. do not work in practice.

For people with neurological ME, these Guidelines are; ‘not a way forward’; nor ‘the best we can hope for in the meantime’. They need to be challenged in-order to get the ‘best we can’ for ME sufferers!

All people with neurological ME, especially the severely affected can be assured that we do not support the view that CBT and/or GET is an appropriate treatment for anyone with ME, including the mildly and moderately affected.

Simon Lawrence

25% ME Group

support for severe ME sufferers

21 Church Street
Troon
Ayrshire
KA106SQ

enquiry@25megroup.org  

www.25megroup.org

Position statement on the issue of the minutes of 15 May public Open Forum meeting from Ciaran Farrell

Ed: Ms Diane Newman runs the Peterborough M.E. & CFS Self Help Group and is a former trustee of the ME Association. Ms Newman is currently styling the organisation she runs as the M.E. Society (former Peterborough M.E. & CFS Self help). There is no website currently accessible in either of these names.

In May 2007, Ms Newman undertook to organise two ME Awareness Week “Peoples Day Events”. She also took on the role of Event Organiser for two events to mark ME Awareness Week 2008 – the first on 12th May and a public “M.E./CFS Open Forum” meeting held in a House of Commons committee room on 15th May.

This meeting was chaired by Ms Newman and was held independently of any organisation with which Ms Newman may be involved.  It was not held under the auspices of the M.E. Society (former Peterborough M.E. & CFS Self help).

The Agenda for the “M.E./CFS Open Forum” meeting held on 15 May can be read here:

http://readmeukevents.wordpress.com/2008/05/07/open-forum-meeting-15-may-house-of-commons/

On 27 June 2008, Ms Newman published brief “Notes” in relation to these two events on the Co-Cure mailing list which can be read here:

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0806d&L=co-cure&T=0&F=&S=&P=5788

27 June 08 Notes of the 12th May M.E. Peoples Day Event Report and 15th May M.E./CFS Open Forum

Ms Newman’s “Notes” are largely illegible due to known formatting problems with her email account. But at the foot of this notice Ms Newman states:

“c. A number of other significant issues were raised under ‘AOB’ and will be covered in the minutes of the meeting which will be available in the near future.”

But Ms Newman has failed to publish the minutes of this public “Open Forum” meeting.

So what was discussed and the decisions that were taken at this public meeting have not been placed in the public domain. Nor is it known what the outcome of any decisions taken at that meeting has been since no further updates have been issued by Ms Newman.

In July, Mr Trevor Wainwright, who had been unable to attend the meeting, resigned as Patron to these events.

Below I am publishing a position statement from Mr Ciaran Farrell who was one of six individuals who had attended this public meeting. All enquiries about the chairing of this meeting should be directed to Ms Newman.

For enquiries about the content of the statement below, please contact Mr Farrell.

——————————

May be reposted

Position statement on the issue of the minutes of 15 May public open Forum meeting

Ciaran Farrell

21 November 2008

I was asked by the organiser of the public open Forum meeting of 15 May, Ms. Diane Newman to make a complete audio recording of the meeting which will be used for two purposes, firstly to provide a record of discussions for those who attended the meeting, and secondly for publication as the meeting was a public meeting and there was no objection whatsoever to the publishing of the entire audio record from the outset.

I explained this at the start of the meeting to those present before I started making the recording, and I advised those present to be aware of the fact that they were going to be recorded. I said that if those present did not want me to make the recording, and I would not do so. All those who were present agreed to be recorded and agreed the basic terms under which they would be recorded.

Since the group made this decision I said that I would record the meeting with their consent, and advised them to bear in mind that whatever they said would obviously be recorded, and presumably subsequently published for all to hear. During the course of the meeting I did advise that certain speakers ought to bear in mind the fact that they were being recorded. My own approach to this matter was that over the course of many years I have attended many public meetings and that I had grown used to the fact that anything I said could be taken down either electronically or in notebooks by anyone present who may wish to question me on what I said at the meeting subsequently.

I did say that if there were problems I could edit out certain portions or responses or discussion from the finished audio recordings for publication, but that those who made the contributions that they wished to be edited out would have to inform me of those edits they wanted me to make, and there would also be technical difficulties in making the required edits, so although I was perfectly willing to edit the recordings as required, even though it would be technically difficult to do, I would do it. I also explained after the meeting that I would provide all those present with a full copy of the audio recording for them to listen through and decide whether or not any edits should be made, and to advise me accordingly. I did emphasise that it would be much better for technical reasons only not to have to do this.

My own personal position on the matter is that I believe that in the interests of transparency and honesty and accountability the audio recording should be made available to any person or persons or organisations that would like to receive a copy of it. It would be preferable in my view if the recording could be placed on some sort of Internet website facility whereby anybody who wished to download it could do so. Those who would be unable to use such a facility for various technical reasons could be provided with these CDs concerned.

The meeting began at approximately 2:10 and finished at approximately 6:20 PM, plus there are approximately 4 hours and 10 minutes of audio recording which cannot easily for technical reasons be placed on a website facility, and I do not have such facilities myself.  The recordings that I have made consist of four CDs in their final finished on edited form.

Although there are only six people at the meeting there has been considerable debate after the meeting concerning the issue of minutes, the decisions taken at the meeting, the status of the meeting, in relation to what actually took place at the meeting, and therefore the role of the audio recording in settling these disputes.

In order to deal with the issues more clearly, and to reduce the impact of characters and personalities on the matter of the issues, I feel the best way of describing the current situation is in relation to the various camps of opinion that exist, or to the best of my knowledge have existed and continue to exist. One individual may occupy one or more of the following camps :-

1] Those who are in conflict with others who were present at the meeting about what was decided at the meeting and whether or not any decisions taken at the meeting were valid, or binding on the organiser in any way shape or form, on any kind of group that the meeting may be seen to constitute, or the organiser of the group or meeting. It is the stated view of the organiser that the meeting made no decisions because it was not capable of making any decisions in any way shape or form and therefore no decisions could have been arrived at.

This clearly is not a logical stance since the audio recording quite clearly identifies a number of decisions taken because the meeting quite clearly concluded certain sections of the agenda with some kind of collective action that the meeting would take either via an individual who volunteered to carry out some kind of action, on behalf of the meeting, or group, all those collective actions which it was understood by those present at the meeting that the organiser would take, possibly in consultation with others as a result of the decisions made at the meeting. To deny this was the case is simply to deny the content of the audio recordings, and the basis upon which the meeting was set up, and the nature of the discursive agenda which prompted future action by the group or meeting to be discussed on 15 May.

2] Those who principally disagree with the stance that the organiser has taken over this matter on various different issues, but as these various issues range over a number of matters they cannot be easily or quickly resolved without reference to the dispute concerned, or the above considerations. The organiser claims that the audio recordings support her point of view, when clearly this is not the case as can be witnessed from the content of the recordings themselves, and this has led to conflict between the organiser and many of those present at the meeting.

3] There are those who feel that they said some rather ill considered things at the meeting, as it might get them in trouble, and so they want that to have certain portions of the recording edited, but on listening to the recording cannot and will not identify any portions to be edited out, but basically feel that the recording should not be made public.

4] There are those who said one thing at the meeting, and subsequently changed their mind about what they said at the meeting, and have distanced themselves from what they said at the meeting, thus again undermining the decisions and decision making processes at the meeting. It is not surprising that this group overlap with the one identified in point 3, above.

5] There are those who are simply unaware of the true nature of what was said at the meeting due to the fact that I was unable to supply them with a copy of the audio recordings as I have no address to which to send them. Given the size of any audio file which would contain the recordings it is not feasible to send the recordings via e-mail.

6] There are those who consider the matter closed as it happened some time ago and they have now moved on, so they really do not see that it is an issue what happens at the meeting and whether or not the decisions taken were or are not binding on the organiser in some way to follow-up or follow through, possibly with the help of others.

7] There are those who have not engaged with me in my attempts to try and produce an audio recording and to ensure that it is an acceptable recording from their point of view that could be published as was the original intention and agreement of those present at the meeting.

During the course of the many disputes that have occurred between the organiser and those present at the meeting concerning the status, decisions taken, and the ability of the meeting to take decision, or form any form of collective view and express that view collectively, the meeting’s organiser Ms. Newman, decided that she was going to produce certain summaries of the 15 May event, and the event on 12 May as well. She did this without consulting those present at 15 May meeting either properly or adequately and in certain instances certain individuals were deliberately left out of the group who received the draft copies of the summaries. The summaries concerned took a certain view of the events as a whole and of 15 May meeting that were not compatible with the actual events of 15 May meeting, and with the organiser’s previous statements about what had occurred at the two events concerned, thus producing confusion and a certain amount of conflict between the organiser and those present at the events.

On being challenged about the contradictions between the decisions made at 15 May meeting and the summary produced by the organiser, Ms Newman took this decision to act in accordance with point 1 above, although under pressure she conceded to make minor amendments to the summaries, the summaries themselves, particularly that of 15 May meeting, she refused to change in certain key respects, therefore going back on the decisions of 15 May meeting, thus causing further confusion and conflict as to what had occurred at the meeting, and a status that the meeting had to take any form of collective view about any matter whatsoever.

Subsequently, Ms Newman did not consider it to be a priority to produce minutes of 15 May meeting, as she contended that the summaries were all that was required, even though she had given a commitment to producing the minutes herself and that the full state of affairs would be revealed in the minutes, when she had chosen to deliberately misrepresent matters in the summaries.

Ms Newman contended that in order to produce the minutes it would be necessary for her to go back through the entirety of the audio recordings and to start from scratch, when this quite clearly was not necessary as she had made copious notes during the course of 15 May meeting which would form the basis of the minutes and a write-up for public consumption of the events of the meeting. Logically, all that was required was for Ms Newman to check certain key points in her notes with the audio recordings, but she refused to do this. She denied making the notes in question, on the basis that they were for her personal use only and did not constitute any form of written record of the meeting. This clearly was not the case as many times during the meeting she wished to make summaries of a given point, or issue so that she could get it down on paper.

When the minutes had still not been produced, and Ms Newman came under pressure to do so, she decided that she was too busy, or possibly too ill to undertake such a mammoth task from scratch herself. She then decided to parcel out the task of producing the minutes to various people present at the meeting. It would have been a sensible thing to do to use the timeframe on the CDs as a guide rather than an arbitrary set of Time divisions which related to time from the start of the meeting, as it is not possible to know when a certain discussion took place by the clock, as a clock is a visual device and does not show on an audio recording. In addition, there were those who did not actually have a copy of the audio recording who were delegated to produce minutes from it. Each person was allocated a certain portion of the meeting to cover, and then they would produce the relevant minutes and send them into Ms Newman who would correct them and put them in the right format and house style to produce a finished document.

By the time is Newman had decided to parcel out the job of producing the minutes to those who were present at the meeting, the meeting group had become so dysfunctional and I very much doubt if anyone took her up on this matter, meaning that as far as I am aware no minutes were produced by those whom Ms Newman had delegated her job to, and also because all those concerned were all too aware of the fact that Ms Newman was abdicating her personal responsibility for producing the minutes in the first place.

Bearing all of the above in mind, any attempt on my part to produce some written record or minutes of 15 May meeting would naturally end up in opening up all the conflicts I have set out above as any written record produced from the full audio record and the agenda for the meeting will be subject to judgements made by me in constructing a written document which summarises the content of the audio recording. Therefore I do not consider that any form of minutes that I would produce would be seen as a fair and accurate written record of what took place at the meeting by certain parties who were present at the meeting, and most particularly Ms Newman herself.

The only other option that I have which would remove the matter of my own personal judgement from my construction of a written document from the audio recordings, is to make available the entire audio recording of the meeting, possibly in association with the agenda for those who do not have it, publicly to the ME community in order that anyone who listens to the recordings they make their own judgements about what was said, and not, and about what decisions were made and the understandings of those who were present around the table on the day.

I know that by taking this course of action I would be going against the express wishes of certain individuals who have changed their mind about what they said at the meeting and have sought to distance themselves from it, but in order to be able to make the audio recordings available to the ME community I must judge the greater good of the matter one way or another.

It is therefore my intention to make the audio recordings available to those who request a copy of them from me unless I hear to the contrary from those concerned, who know who they are, within the next four weeks.

Ciaran Farrell

Attendee at the 15th of May meeting

ciaran@jfarrell58.freeserve.co.uk

Enquiry regarding status of ME Alliance

Enquiry regarding status of ME Alliance

From: Suzy Chapman
To: Heather Walker; Sir Peter Spencer; Dr Charles Shepherd; Tony Britton
Sent: Thursday, November 20, 2008 1:38 PM
Subject: Status of the ME Alliance

20 November 2008

Re: Current status of the ME Alliance

It was understood that the existing ME Alliance was anticipated to be reconvening earlier this year.

I should be pleased if you could clarify the following:

1] Is the ME Alliance still extant?

2] Who are the current members of the ME Alliance?

3] Does the ME Alliance currently have a convener and who is the convener?

4] When did the last meeting of the ME Alliance take place and which organisation reps were present at that meeting?

5] Has a date for a future meeting of the ME Alliance been set and when is the next meeting anticipated to be held?

6] Does the current ME Alliance have a constitution, mission statement or statement of objectives and if so where can these be accessed?

7] Does the ME Alliance intend to publish an agenda, minute, note or summary of any meetings it might hold in the future?

There has been much speculation amongst the ME community about whether the meetings being held by the Countess of Mar are a “new Alliance” or a “Reformed Alliance” which has replaced the “old Alliance”.

Given that very little information about the existing ME Alliance has been issued over the last couple of years since the departure from Action for ME of Chris Clark, and given the evident confusion about the current status of the ME Alliance it would be appropriate for a statement to be issued clarifying the situation and responses provided to the queries raised above.

Sincerely,

Suzy Chapman

me.agenda@virgin.net
http://meagenda.wordpress.com
http://readmeukevents.wordpress.com

APPG draft TOR: Correspondence with the office of Dr Ian Gibson

Dr Ian Gibson MP is Secretary to the APPG on ME.  Dr Gibson set up the informal GRSME panel and chaired the “Gibson Inquiry”, himself.  We’re told that he has already committed to being a panel member for this proposed APPG inquiry into NHS service provision.  It remains unconfirmed whether APPG chair, Dr Des Turner, will be asking Dr Gibson to chair this proposed inquiry.

On 18 November, I sent the following to the APPG secretariat, a function shared between AfME and the MEA:

To: Heather Walker; Tony Britton, Sir Peter Spencer; Dr Charles Shepherd
Cc: Sarah Vero; Dr Des Turner; Dr Ian Gibson; The Countess of Mar

Sent: Tuesday, November 18, 2008
Subject: Re: Comments on draft Terms of Reference for APPG Inquiry into NHS service provision

Further to my response to the Draft TOR, of 12 November.

This morning I have published the 25% ME Group’s response to the draft TOR on my website. 

I note that the 25% ME Group has also called for an extension in order to enable wider consultation.

Ten days notice in which to submit comments on this document failed to make proper allowance for the needs of a disability group for adequate time in which to scrutinise this document and submit responses. 

Does the APPG plan to respond to the calls it is known to be receiving, reconsider and announce an extension?

I look forward to receiving a response.

I’ve received no response at the time of posting. 

Yesterday (19 November) I wrote to Dr Gibson at his parliamentary office:

To: GIBSON, Ian; VERO, Sarah Elizabeth
Sent: Wednesday, 19 November 2008
Subject: Your concerns about the ToR for APPG Inquiry into NHS service provision Importance: High

Dear Dr Gibson,

I do hope you and Sarah are keeping well.

I’ve had no response to my email of 18th (below) from the APPG on ME secretariat or from Des Turner about a reconsideration of the deadline for comments on the Draft ToR for this proposed inquiry into NHS service provision.

Many within the wider ME community share my view that individuals and registered patient organisations like the 25% ME Group and other patient representatives have been marginalised from informing these Terms of Reference.

The ten days’ notice announced on 4 November in which to submit comments simply wasn’t sufficient for a patient group with significant ill health and disability issues.

I’m given to understand that you share some concerns with those who have already contacted you.  As Secretary to the APPG, could I ask that you please consider talking to Des Turner and negotiating for an extension?  

[Copy of email from Suzy Chapman to APPG Secretariat, 18 November; Copy of response by Suzy Chapman to draft Terms of Reference to APPG Secretariat CCd to Dr Ian Gibson, Dr Des Turner, 12 November appended]

 

I’ve received the following response:

From: VERO, Sarah Elizabeth
To: Suzy Chapman
Cc: GIBSON, Ian
Sent: Wednesday, November 19, 2008 3:20 PM
Subject: RE: Your concerns about the ToR for APPG Inquiry into NHS service provision

Dear Suzy

Please be aware Dr Gibson and I are not responsible for administrating the APPG on ME or for organising the Inquiry into NHS Service Provision. As such we are not a point of contact for concerns with either the APPG generally or the Inquiry. However I have passed all your emails to the APPG Secretariat asking them to coordinate a response with Dr Turner.

Regarding your most recent email below – I will ask Dr Gibson to talk to Dr Turner about the concerns over the deadline.

Sarah Vero

Research Assistant to Dr Ian Gibson MP

Tel: 020 7219 4038

 

On 17 November, I wrote to The Countess of Mar: 

To: MAR, Countess
Sent: 17 November 2008 14:54
Subject: RiME; Comments on draft Terms of Reference for APPG Inquiry into NHS service provision

Dear Lady Mar,

1] RiME’s exclusion from your meetings with ME patient organisations

I should like to register my concern that although a non membership organisation which is registered with the Charity Commission as “The Chronic Fatigue Society” also known as “reMEmber” was extended an invitation to attend your meeting on 8 October that the patient representative organisation “RiME” was not included amongst those invited to attend.

I would welcome a clarification of the basis on which it was decided which patient organisations would be invited to participate in these meetings which you are chairing.

2] Comments on Draft Terms of Reference for APPG Inquiry into NHS service provision

I am most concerned that the APPG did not consult with the wider ME community over whether it would welcome an inquiry into NHS service provision at this particular point in time or whether, with the High Court Judicial Review of the NICE Guideline on “CFS/ME” listed for early next year, it would be judicious to wait until after the Court Hearing in February has taken place.

Nor has the APPG consulted with the wider ME community over what any inquiry held by the APPG should be looking into.

There is much disquiet about these Terms of Reference and about the project, as a whole. But with only ten days notice in which to prepare responses (for which there was a caveat of “minor amendments” only) and with so many unknowns relating to the processes and procedures through which this project would achieve its objectives – whatever those objectives might be – the ME community has been caught on the hop.

I do not consider that the APPG has sought to be inclusive of the wider ME community or made appropriate provision for the needs of a disability group for adequate time in which to scrutinise this document and submit responses.

There have been calls for an extension to the deadline but no extension has been announced by the APPG secretariat.

I append a copy of my response to the APPG secretariat to the Draft Terms of Reference.

Lady Mar replied that my concerns regarding RiME were noted.  That she had had nothing to do with the formulation [of the] APPG Inquiry, and that she suggested I address my questions to the Chairman of the Group.  That she would point out that the APPG on ME, like all APPGs, is there for the benefit of members of both Houses who wish to be informed about a particular interest. That she believed that it is, therefore, appropriate for the Chairman and his officers to decide what subjects they wish to tackle and how they intend to proceed.

I noted that Lady Mar did not provide a response to my request for clarification of the basis on which it was decided which patient organisations would be invited to participate in the meetings that she is chairing.

I will update should I receive any further response from the office of Dr Gibson, Dr Turner or the APPG secretariat.  In the meantime, I encourage you all to continue to send in your concerns, comments and responses to the draft Terms of Reference, irrespective of the unacceptably tight ten day deadline for comments that was announced by the secretariat, on 4 November. 

I am collating responses to the draft Terms of Reference, here on ME agenda, and also any replies respondees may have received.  If you would like your response published please forward a copy directly, or via the Contact tab, and please also forward a copy to Paul Davis, RiME  rimexx@tiscali.co.uk  

Don’t let the deadline discourage you from submitting your comments to the APPG secretariat – get a response in, anyway.

The draft Terms of Reference can be read here:  http://tinyurl.com/5ysbox  

Contact details for the APPG Secretariat here:  http://meagenda.wordpress.com/2008/11/05/appg-secretariat/

Responses already published on ME agenda can be read here:

Response from RiME

Response from Invest in ME

Response from 25% ME Group

Response from Suzy Chapman

Response from Greg Crowhurst

Response from Ciaran Farrell

Correspondence between RiME and Lady Mar

logo-rime

PERMISSION TO REPOST

Campaigning for Research into Myalgic Encephalomyelitis RiME 

Correspondence between RiME and Lady Mar

11/11/08

Dear Lady Mar,

Reformed ‘CFS/ME’ Alliance

In the House of Lords April 16 2002 did you not condemn the CMO Report saying the terminology was ambiguous and confusing and that it denied the true nature of ME, concluding:

…. Many of those who are severely affected feel let down by the apparent capitulation of the two major charities which appear to accept the bio-psychosocial model of ME….

Then in the House of Lords Jan 22 2004 did you not argue for a strict adherence to G93.3 Code and criticise the use of Graded Exercise and CBT, saying:

…. They (ME patients) have been badly let down by their main charity, AfME. It is now supporting the Wessely ‘management’ program and is, I see, to be actively involved in the development of the new treatment centres. I have serious reservations about the activities of that organisation, but now is not the time to air them….

When I read these comments out at the APPG Meeting Oct. 8, you are reported to have said, ‘I would not countenance working with the charities if I thought they had not changed’.

Quite some statement. In order to make such a public statement it would seem reasonable to assume that you have substantial written evidence over a concerted period of time to that effect, yes? Can you share it with us, please….

 

[House of Lords logo]

Mr Paul Davis
10 Carters Hill Close
Mottingham
LONDON
SE9 4RS

13 November 2008.

Dear Mr Davis

Thank you for your letter of 11 November 2008.

I acknowledge what you say in your letter but, as far as I can see, neither you nor your
organisation appear to have made much progress in advancing the case for ME
sufferers to Government over the 15 years that I have been working with PwME, and
therefore I do not see why I should account for my actions to you.

I would caution you to read the NICE guidelines very carefully. In the introduction to
their Quick Reference Guide, which is probably the material to which GP’s will refer,
they say:
“CFS/ME involves a complex range of symptoms that includes fatigue, malaise,
headaches, sleep disturbance, difficulties with concentration and muscle pain.” And
“The causes and disease processes of CFS/ME are still not understood, but this
guideline provides practical recommendations that can help people manage the
condition
with the aim of maintaining and if possible – extending their physical,
emotional and cognitive capacity. Different combinations of approaches will be
helpful for different people”
(The italics are mine here and further into my letter.)
these are simple facts. We do not know whether the illness is neurological or viral, or
whether there is another cause or causes.

The first bullet point in this section -
“Key elements of Management include:
Working in partnership with the person with CFS/ME.”

I could go on providing you with quotations from the Guidelines. A thread to be
found throughout is that all decisions should be joint ones between medical
practitioner and patient and on patient-centred care. Under the General principles of
care it is stated:
“Be aware that people with CFS/ME have the right to refuse or withdraw from any
component of their care plan without this affecting the provision of other aspects of
their care or future choices about their care.”

GP’s are specifically advised not to offer people with ME:
“- Advice to undertake unsupervised, or unstructured, vigorous exercise (such as
simply ‘go to the gym’ or ‘exercise more) – this may worsen symptoms.

[Page 2]

- Specialist management programmes delivered by practitioners with no experience in
the condition.”

I am greatly saddened that there is so much hostility to the NICE Guidelines and,
specifically, to CBT/GET. I have personal experience of the effects of an illness
which wasn’t diagnosed until I’d had it for three years – OP poisoning. I have been
through the disbelief, both from medical profession and family. I have had a referral
to a psychologist (which I refused). I know what it is like to suffer excruciating pain
and mental confusion. I have learned how to manage my illness (call it CBT, if you
like), which has left several unpleasant symptoms, jointly with my GP and
consultants, so I think I have some idea of where people with ME are coming from.
The whole point is that CBT/GET are not compulsory. At the moment there is no
other universal treatment. Might I respectfully suggest that you read the NICE Quick
Reference Guide carefully and, instead of vigorously opposing everything in them,
you use its contents to empower people with ME to negotiate the best way forward
for them with their medical practitioners, specialists and social service providers?

The CMO, the Department of Health and NICE acknowledge that ME is not a
psychosocial problem but, as with any long-term illness, there are psychological
aspects to it. In the absence of any treatment, they recommend CBT/GET for a few
who might benefit from it. It really is time that we all acknowledge the good bits of
any government instigated proposals and that we work together to put right those
parts that are unhelpful.

For your interest, I attach my opening remarks for the meeting I convened on 8
October. This is my position. I hope it clarifies matters for you.

Yours sincerely

Countess of Mar

 

If you have concerns, Lady Mar can be contacted at: The House of Lords, London, SW1A OPW or marm@parliament.uk

If you write, please send us a copy.

Paul Davis 10 Carters Hill Close, Mottingham, SE9 4RS rimexx@tiscali.co.uk  RiME 

All the NICE girls love a sailor…

“Action for M.E. is calling for additional funding for the provision of more M.E. specialists and for more suitably trained GET therapists.”

Sir Peter Spencer, Chief Executive of AfME, Press release, 12 May 2008

http://www.afme.org.uk/news.asp?newsid=355

 

“I am greatly saddened that there is so much hostility to the NICE Guidelines and, specifically, to CBT/GET…”

Countess of Mar, Letter to Paul Davis, RiME, 13 November 2008

http://meagenda.wordpress.com/2008/11/17/rime-letter-from-countess-of-mar/  

 

In her letter to RiME, the Countess had also written:

“In the absence of any treatment, they [NICE] recommend CBT/GET for a few who might benefit from it.”

 

CBT/GET recommended by NICE for just “a few”?  Where has the Countess got this idea from?

 

On 11 May, this year, the ME Association issued a position statement on GET

The MEA said: The ME Association rejects calls being made this week for the number of graded exercise therapists to be increased because we have concerns about both the effectiveness and safety of this controversial approach to management.”

and on 15 May, The ME Association issued a second statement on GET, this time jointly with The Young ME Sufferers Trust (to whom the Countess of Mar is Patron):

These two organisations said:

“The ME Association and The Young ME Sufferers Trust today jointly reject this week’s call for the number of graded exercise therapists to be increased. This is because of our serious concern for the safety of patients given this controversial approach to management…

…The ME Association and The Young ME Sufferers Trust are therefore jointly calling for an urgent review of the NICE recommendation that everyone with mild or moderate ME/CFS should be automatically offered a course of GET.

 

Just a few days after The Countess of Mar had written to RiME she chaired a second private meeting with selected patient organisations – a meeting from which RiME, once again, was excluded.  These meetings are said to be looking at how the patient organisations might work together on “issues of common concern”.  But mindful of what some are calling a volte-face on the part of the Countess of Mar on her position on CBT and GET do her views not cast a shadow over her chairing of these meetings?

If Lady Mar is planning a third meeting with selected organisations are her currently held views and position on CBT/GET and the NICE Guidelines going to be challenged by those present?  Will those organisations to which Lady Mar is a Patron be prepared to issue position statements?  What is Invest in ME’s position?

Action for ME welcomed the NICE Guideline and does not support the Judicial Review.  Action for ME actively supports the clinics and has called for more trained GET therapists.

Has the Countess taken on the role of ambassador for Action for ME and Sir Peter Spencer?  With a Judicial Review of the NICE Guideline scheduled for early next year, is the Countess perhaps seeking to mitigate the impact of a successful outcome for the Judicial Review, and the publicity that would generate, by trying to get selected charities and patient organisations on-side, now? 

APPG chair, Dr Des Turner, is Patron of the Sussex group which has also championed the clinics and he is also a Patron to BRAME.

What lies behind his sudden call for an Inquiry into NHS service provision?  And why is he in such an almighty hurry to get on with it?  Is this project a result of pressure from AfME or the Sussex group or from BRAME, or all three? 

Or is it the prospect of the NICE Judicial Review that underpins this APPG inquiry?

AfME GET quote
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