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Petition: That the ME Association leave the CMRC

lilpink

Senior Member
Messages
988
Location
UK
You clearly are very passionate about the injustices we face as people with ME, I'm with you on that, I'm not your opposition.

Yes you are correct I am very passionate with regard to ME advocacy. I do feel this (the MEA in concert with the CMRC) is a central and pivotal issue. I apologise I misconstrued the thrust of argument in your original post. I did use the word 'collusion' when in addled cognitively challenged , very unwell, mode: I'm sure I meant 'collaboration'. Mea culpa. But the substance of my argument remains. As far as its importance when compared to other issues, I suppose that depends on how any of us view the power of the BPS model and its proponents and its/their effect on the politics of this disease. Imo they are so enmeshed, like a metastasizing cancer, that I find it hard to understand why others don't feel as passionately about this as I do in trying to tease one ('us') from the other ('them').

Fwiw I am a long term (almost 50 yr long) sufferer of this disease. I have been VERY badly iatrogenically harmed by the BPS model of this disease, to the extent that I could have lost my life at the hands of that model. I do not wish other patients to have to breach that wall, the one side of which this disease, whilst pretty horrific, is 'doable' to discover that on the other side there is hell unimaginable to most people including many sufferers of this disease (but not all by a long chalk and maybe you are one of them?). Surely good, strong, passionate advocacy is better than waiting for the body count to increase before people really get to grips with the absurdity of a patient charity happily 'canoodling' ( ;) ) with a 'collaboration' in which the opponent rules the roost?
 
Messages
15,786
Crawley is an ME denialist, especially in the case of severe ME. In her Pervasive Refusal Syndrom (PRS) poster being discussed elsewhere currently, she removes some children's ME diagnosis as a supposed mistake, and declares they have PRS instead. This is not based on any difference in psychological status, the type of symptoms, or even the number of symptoms (an old favorite of MUPS proponents) ... it's entirely based on symptom severity. Too disabled? Too fatigued? Too much pain? That rules out ME, as far as Esther Crawley is concerned.

In her world, severe ME simply does not exist. Being on a board where she is a co-chair is just as bad as a similar association would be with an AIDS denialist. It's shockingly inappropriate that she is on the CMRC, and I don't see how any ME advocate could support the CMRC while it is associated with her.
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
Crawley is an ME denialist, especially in the case of severe ME. In her Pervasive Refusal Syndrom (PRS) poster being discussed elsewhere currently, she removes some children's ME diagnosis as a supposed mistake, and declares they have PRS instead. This is not based on any difference in psychological status, the type of symptoms, or even the number of symptoms (an old favorite of MUPS proponents) ... it's entirely based on symptom severity. Too disabled? Too fatigued? Too much pain? That rules out ME, as far as Esther Crawley is concerned.

In her world, severe ME simply does not exist. Being on a board where she is a co-chair is just as bad as a similar association would be with an AIDS denialist. It's shockingly inappropriate that she is on the CMRC, and I don't see how any ME advocate could support the CMRC while it is associated with her.

To quote EC directly : 'SEVERE ILLNESS IS NOT ON THE ME SPECTRUM' This was said in the context of giving a paediatrician the green light to initiate legal proceedings against the parents and to seize the child who was subjected to intensive physiotherapy, leaving her paralysed.

Only today, I have heard from another Mum who has been told by the same clinic that her severely ill child must undergo intensive physiotherapy.
 

TreePerson

Senior Member
Messages
292
Location
U.K.
@charles shepherd. I do not dislike you or The MEA. I appreciate a lot of what you do. Your book got me through the first few years of illness back in the 1990s when no one else could explain to me what was happening. And given that you have the illness yourself I think you have achieved a great deal on behalf of patients.

However if anything is to change I think you and others need to be much much tougher and harder hitting. Quite obviously that means completely
distancing yourself and The MEA from the bps brigade. I have the impression that you quite like and respect various members of CMRC even if you don't agree with them. Which makes me wonder if you are just too close to it.

People don't hate you or the MEA they are just extremely angry. And justifiably so. People have lost years and years of their lives. They have been mistreated ignored, stigmatised, abused, vilified. People have died. Children have been taken from their parents and treated in such a way that they may never recover physically or emotionally. And some of the people you associate with are responsible for this and continue to promote harmful therapies. This has to end.

I would like you and The MEA to understand this and feel just as angry. I would like you to harness that anger and use it to fight, really fight for the lives of people with ME. And I would very much like you to stop being reasonable and politely debating issues. You need to shout very very loudly and as often as possible about this massive injustice and abuse. If people don't speak out loudly and forcefully nothing changes.
 

thegodofpleasure

Player in a Greek Tragedy
Messages
207
Location
Matlock, Derbyshire, Uk
When I robustly defend a decision that has been made by MEA trustees that some people (mainly non members of the MEA) do not like it is not because trustees have not listened to what people are saying

You need to ask yourself why there are so many non-members disagreeing with the MEA's decisions.
Perhaps your organisation would have many more members if you didn't do such stupid things as supporting the CMRC
 

Stewart

Senior Member
Messages
291
Being on a board where she is a co-chair is just as bad as a similar association would be with an AIDS denialist. It's shockingly inappropriate that she is on the CMRC, and I don't see how any ME advocate could support the CMRC while it is associated with her.

If I was on the board of an HIV and AIDS charity and I found that some - or even all - of my fellow board members were AIDS denialists, I would have to think long and hard before I tendered my resignation.

On the one hand I certainly wouldn't want anyone to think that I was endorsing my colleagues' views by continuing as a member - but I'd be far more concerned by the damage the organisation would do if there was no-one trying to keep the rest of the board in check. It's highly unlikely that I'm going to change anyone's mind, and I'm almost certainly going to be outvoted on a regular basis - but the longer I can stay in the post, the more opportunities I'll have to delay, amend and frustrate policies and initiatives that have the potential to wreck many people's lives. Sooner or later I'm inevitably going to have to resign, but ideally I'd want to take that step at the point when it would do the maximum possible damage - perhaps totally scuppering an ill-conceived project, forcing other board resignations or bringing the whole charity down if possible - because after I've resigned I will have little or no ability to influence anything the organisation subsequently does, and the consequences of those future unchecked actions could be horrific.

It's easy to resign and walk away saying "I don't support this". It's much harder to grit your teeth and stay in the room, knowing that eventually you'll lose the coming argument and you'll have to walk away anyway. But sometimes that's the course of action that produces the better result, even if only marginally.
 
Messages
2,158
I would like you and The MEA to understand this and feel just as angry. I would like you to harness that anger and use it to fight, really fight for the lives of people with ME. And I would very much like you to stop being reasonable and politely debating issues. You need to shout very very loudly and as often as possible about this massive injustice and abuse. If people don't speak out loudly and forcefully nothing changes.

@TreePerson, I understand your anger. I feel it too.

I'm not sure whether this paragraph I quote is addressed to the MEA or to @charles shepherd personally. The MEA does a huge amount already to support patients, educate doctors and campaign for change through engagement with parliament, NICE etc. I don't think a patient organisation whose main remit is patient support and education necessarily has the resources or remit to 'shout very very loudly'. We can't ask an organisation to be what it is not. And shouting loudly may well get some important doors slammed in their faces. Similarly we can't reasonably expect Dr Shepherd to become what he is not. If quiet diplomacy is his way of operating, I for one am grateful for his efforts, despite disagreeing with him on CMRC membership.

I think we certainly do need an organisation that will shout loudly and effectively on our behalf as some of the AIDS campaigners did so effectively. I personally am not in a position to do that. The millions missing demos were a good start. I don't know the way forward when most of us are too sick and we don't have a large well organised group of healthy people ready and willing to take this on as the gay community did on AIDS. Someone suggested the Women's Equality Party might be useful.

What I'm saying in my long winded way is it's unfair to ask leopards to completely change their spots.
 

lilpink

Senior Member
Messages
988
Location
UK
I would like you and The MEA to understand this and feel just as angry. I would like you to harness that anger and use it to fight, really fight for the lives of people with ME. And I would very much like you to stop being reasonable and politely debating issues. You need to shout very very loudly and as often as possible about this massive injustice and abuse. If people don't speak out loudly and forcefully nothing changes.

Yay! Yay! And thrice Yay! (To paraphrase Frankie Howerd. ).
 

TreePerson

Senior Member
Messages
292
Location
U.K.
Yes @trishrhymes I think I was probably asking for both. And I did state my appreciation for what Charles Shepherd has done. But I think that if he doesn't want to fight because he's not that kind of leopard then it might be useful for the MEA to find a leopard that does. Unless you're saying that charities shouldn't advocate they should only provide advice and support?

But I don't see why they shouldn't have someone connected to the MEA who is prepared to campaign very robustly. I don't know if it would need to be a medical person?

These things can make a big difference. For example I think the new chap they've got doing social media is very good. Very sharp and it will help.

Perhaps there is a need to found the political wing of the ME Association? :D
 

Skycloud

Senior Member
Messages
508
Location
UK
Hi @lilpink , I appreciate your reply. I know that "addled cognitively challenged , very unwell, mode" well. I could have been clearer myself. I don't think we disagree about the danger of the BPS lot, I think we probably have a disagreement about strategy in that the MEA and CMRC angle has a higher priority to you than to me. Fill yer boots, lilpink!

It's true that all these things are connected.

I don't really want to use more energy on this myself, or use more of yours when we can both better spend it trying to kick BPS butt (in a metaphorical, strictly non-violent, and not at all death-thready-sociopath way, of course!). I think we understand each other better, I'm off to 'canoodle' my pillow for a bit :)
 

charles shepherd

Senior Member
Messages
2,239
OK - it is very clear that some people on PR don't like the type of carefully thought through and constructive (rather than shouting) advocacy and campaigning that myself and the MEA am involved with - but someone has to do it

The MEA has been the only charity to organise a petition calling on NICE to overrule their experts on the ME/CFS guideline review - with nearly 9000 signatures being collected so far in just four days

I have just written to Board members on the CMRC today to let them know how strongly the MEA is opposing the decision to not update the guideline. From the PR petition thread:

I have now informed Board members on the CMRC that the MEA has created a petition calling on NICE to basically overrule the recommendation of their expert group that has been reviewing all the evidence (which appears to be reviewing abstracts rather than actual papers) and to move forward with a proper and comprehensive review of the NICE guideline on ME/CFS

I have also informed the CMRC that the MEA petition has gathered more than 8800 signatures in less than four days - so I do not think this demonstation of quite overwhelming patient dissatisfaction can be ignored by NICE

NB: The CMRC has NOT been involved with the NICE guideline review, nor the guideline development process, and is NOT a stakeholder in the consultation process. Neither is the MRC.

However, there are members of the CMRC Board who have input into various stakeholder groups - so I feel it is important for them to be aware of the position being taken by the MEA

Interesting to note some of the names on the NICE stakeholder list:

British Medical Journal
Cochrane centre for depresion, anxiety and neurosis
Eli Lilly (drug company)
Ministry of Defence
Royal College of Psychiatrists

Full list of ME/CFS stakeholders in the ME/CFS guideline here:
https://www.nice.org.uk/.../documents/stakeholder-list-2

Dr Charles Shepherd
Hon Medical Adviser, MEA

The MEA was also the only charity to organise a petition opposing the PACE trial when it was being organised

We are also funding Dr Keith Geraghty at the University of Manchester to carry out a two year research study that will analyse the theoretical basis for recommending the use of CBT and GET in people with ME/CFS. MEA announcement:

http://www.meassociation.org.uk/201...-treatments-recommended-by-nice-13-july-2017/

I have spent most of this afternoon writing a review of how GPs can improve the diagonsis and management of ME/CFS - something that followed on from having a meeting with senior representatives of the Royal College of General Practitioners and the Countess of Mar back in June

See Minutes on another PR thread:
http://forums.phoenixrising.me/inde...-on-june-22-2017-at-the-house-of-lords.52811/

This advocacy has also resulted in an invitation to organise a Workshop on ME/CFS at the annual Royal College of General Practitioners (RCGP) conference in Glasgow - see FMG Minutes

On Tuesday this week I was at a meeting with Dr Diane O'leary from the Kennedy Institute of Ethics in Washington to talk about medical ethics in relation to the way people with ME/CFS are being treated (and mis-treated) by the medical profession here in the UK - see another discussion on PR

As far as I am concerned these are very constructive and useful approaches to advocacy that take a lot of time and effort - and there are several others taking place 'behind the scenes'

Finally, for the benefit of people on PR who are not members of the MEA, we have regularly asked our members for their views on both the charity's membership of the CMRC and our position on the MEGA research study through our MEA Facebook Page and through ME Essential, our quarterly magazine - ME Essential. To date the feedback on both of these topics has been minimal - which suggests that our members are satisfied with the way in which we are dealing with both of these controversial topics. When MEA members disagree with something we are doing, or proposing to do, they soon let us know. I do not have exact figures to hand but my understanding is that we have had about 10 to 15 emails and phone calls about membership of the CMRC (with a significant proportion coming from non members) over the past few months. I think we have had three or four people who have decided to terminate membership, or are thinking about the termination their membership of the MEA, as a result of our position on MEGA (which is to decide whether or not to endorse/support the study when we have details of the study design and patient selection process) and/or our membership of of the CMRC. We have not had any communications from people relating to the NICE guideline review and our membership of the CMRC. We have also received messages of support for our position from other members. We continue to genuinely welcome input from our members on both topics. The content of any emails or phone calls that are received are forwarded to all MEA trustees for their consideration.

So yes, I am feeling rather p....d off tonight

And I am not going to waste any more time today with arguements that are going nowhere

I have better things to do this evening...

CS
(Content added to at 11.20pm on 13th July)
 
Last edited:

lilpink

Senior Member
Messages
988
Location
UK
"If anger proceeds from a great cause, it turns to fury; if from a small cause, it is peevishness; and so is always either terrible or ridiculous."
Jeremy Taylor.
 
Charles I really wish you would answer my genuine questions please

1.why is the situation different for MEA than ME research UK?

2. How long has CMRC existed and what have they achieved for the severely ill?

Thanks.
My prediction here is that you won't get an answer @emmaj - I have asked previously for examples of where the MEA feel that their membership of the CMRC has allowed them to influence decisions in a way that we, the patients, would consider more beneficial to patients, both here and on the MEA Facebook page, and each time I've been ignored.

ETA: If you want a brief overview of the CMRC, try http://me-pedia.org/wiki/UK_CFS/ME_Research_Collaborative
 

lilpink

Senior Member
Messages
988
Location
UK
both here and on the MEA Facebook page, and each time I've been ignored.

And then we are usually chastised as annoying children would be. We have the narrative (straw man argument) about abusive patients/ lack of research yada yada yada. As yet has anyone made an observation about how rude and patronising representatives of the some of the patient charities can be to the very people their charities claim to serve? For the record I'm not only referring to the MEA, but as can be seen above they are quite partial to this behaviour, and it is prevalent on FB too, and no I'm not the only one to have observed or received this treatment. Woe betide you if you happen to disagree. It's badly done isn't it? After all we patient advocates get no financial remuneration for our efforts, all we want is to get better and for others with this disease to get better, and yet we are ridiculed for our efforts (which are often costly in terms of our health) and yet for some reason very few people are willing to raise this point. I am very closely connected with someone who holds a very senior position in a organisation with charitable status and this behaviour would NOT be acceptable in that arena at all. I'm au fait, to some degree, with how these things ought to be done.
 

TreePerson

Senior Member
Messages
292
Location
U.K.
OK - it is very clear that some people on PR don't like the type of carefully thought through and constructive (rather than shouting) advocacy and campaigning that myself and the MEA am involved with - but someone has to do it

The MEA has been the only charity to organise a petition calling on NICE to overrule their experts on the ME/CFS guideline review - with nearly 9000 signatures being collected so far in just four days

I have just written to Board members on the CMRC today to let them know how strongly the MEA is opposing the decision to not update the guideline. From the PR petition thread:

I have now informed Board members on the CMRC that the MEA has created a petition calling on NICE to basically overrule the recommendation of their expert group that has been reviewing all the evidence (which appears to be reviewing abstracts rather than actual papers) and to move forward with a proper and comprehensive review of the NICE guideline on ME/CFS

I have also informed the CMRC that the MEA petition has gathered more than 8800 signatures in less than four days - so I do not think this demonstation of quite overwhelming patient dissatisfaction can be ignored by NICE

NB: The CMRC has NOT been involved with the NICE guideline review, nor the guideline development process, and is NOT a stakeholder in the consultation process. Neither is the MRC.

However, there are members of the CMRC Board who have input into various stakeholder groups - so I feel it is important for them to be aware of the position being taken by the MEA

Interesting to note some of the names on the NICE stakeholder list:

British Medical Journal
Cochrane centre for depresion, anxiety and neurosis
Eli Lilly (drug company)
Ministry of Defence
Royal College of Psychiatrists

Full list of ME/CFS stakeholders in the ME/CFS guideline here:
https://www.nice.org.uk/.../documents/stakeholder-list-2

Dr Charles Shepherd
Hon Medical Adviser, MEA

The MEA was also the only charity to organise a petition opposing the PACE trial when it was being organised

I have spent most of this afternoon writing a review of how GPs can improve the diagonsis and management of ME/CFS - something that followed on from having a meeting with senior representatives of the Royal College of General Practitioners and the Countess of Mar back in June

See Minutes on another PR thread:
http://forums.phoenixrising.me/inde...-on-june-22-2017-at-the-house-of-lords.52811/

This advocacy has also resulted in an invitation to organise a Workshop on ME/CFS at the annual Royal College of General Practitioners (RCGP) conference in Glasgow - see FMG Minutes

On Tuesday this week I was at a meeting with Dr Diane O'leary from the Kennedy Institute of Ethics in Washington to talk about medical ethics in relation to the way people with ME/CFS are being treated (and mis-treated) by the medical profession here in the UK - see another discussion on PR

As far as I am concerned these are very constructive and useful approaches to advocacy that take a lot of time and effort - and there are several others taking place 'behind the scenes'

So yes, I am feeling rather p....d off tonight

And I am not going to waste any more time today with arguements that are going nowhere

I have better things to do this evening...

CS

I do appreciate all that. The petition is really good and I was personally very glad to see it supported by afme. It's what's needed. For the charities to work together and give a clear strong message. The shouting isn't supposed to be taken too literally. I'm not advocating incoherent yelling or violence. Just something that comes across as harder hitting. That gives out a completely unequivocal message to the public and the media. Re GET/CBT, PACE, BPS theories of ME, and most importantly the sheer levels of suffering and lack of support. That's what I want heard loudly.
I think there is room for both types advocacy. And probably a need for both.

I am not sure if the above means the CMRC as a group has no input to NICE but individual CMRC members do have input in other capacities? The stakeholders mentioned are not ones that cheer me up.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
If I was on the board of an HIV and AIDS charity and I found that some - or even all - of my fellow board members were AIDS denialists, I would have to think long and hard before I tendered my resignation.

On the one hand I certainly wouldn't want anyone to think that I was endorsing my colleagues' views by continuing as a member - but I'd be far more concerned by the damage the organisation would do if there was no-one trying to keep the rest of the board in check. It's highly unlikely that I'm going to change anyone's mind, and I'm almost certainly going to be outvoted on a regular basis - but the longer I can stay in the post, the more opportunities I'll have to delay, amend and frustrate policies and initiatives that have the potential to wreck many people's lives. Sooner or later I'm inevitably going to have to resign, but ideally I'd want to take that step at the point when it would do the maximum possible damage - perhaps totally scuppering an ill-conceived project, forcing other board resignations or bringing the whole charity down if possible - because after I've resigned I will have little or no ability to influence anything the organisation subsequently does, and the consequences of those future unchecked actions could be horrific.

It's easy to resign and walk away saying "I don't support this". It's much harder to grit your teeth and stay in the room, knowing that eventually you'll lose the coming argument and you'll have to walk away anyway. But sometimes that's the course of action that produces the better result, even if only marginally.

Sounds reasonable. Except that it doesn't work. The organisation is set up with certain goals in mind. One person disagreeing simply gets steamrollered/left out of the loop on what is going to happen regardless of any protestation.

Don't take my word for it. Peter Tatchell who has 50+ advocacy experience has said that any gains from 'inside the tent' in his experience have been very few and far between. Most movement in any social justice issue has come from without and from civil disobedience.

See: http://forums.phoenixrising.me/inde...ge-happen-for-human-rights.52693/#post-872566

Dr Shepherd himself has stated what he has accomplished through his advocacy work in response to a question of why stay. The answer looked to me like there were some very positive things accomplished none or maybe one of which involved being in the CMRC. Virtually everything else could be accomplished while not having anything to do with them.

Again, and I don't know how else to express this to show the gravity of the meaning, to associate with CMRC is to be party to ligitimising their actions. There is so much there that needs to be reformed. If it were the case that there was some good to be had already then maybe progress could be made. This is not the case. The CMRC does not represent patient interests period. They represent the vested interests of ME deniers.

When the whole concept needs reforming maybe it's time to throw the concept out (or in this case leave).