Petition: That the ME Association leave the CMRC

[Skycloud]

I'm not going to sign.

I just do not want to raise any energy or enthusiasm for this when there are other more important issues right now.

Just my view

edit to add - not a comment on anyone else signing at all

 

[Jo Best]

I am not signing as I'm not a member of the ME Association. They have proved to me repeatedly over recent years that they do not represent my interests as a person with ME and that I cannot trust what they do or say. So I shouldn't have clicked on this thread, but I'm reminded that a few years ago, the then Vice-Chair of the another UK ME charity told its members on Facebook to vote with their feet if they didn't like what the charity was doing. It seems that's what @lilpink has decided to do, but I can understand other people might value their MEA membership.

 

[charles shepherd]

I am obviously well aware that there is a small and very vocal group of people on PR who do not like me or the MEA

That's life and coming from Yorkshire I can cope with the rough and the smooth of what goes on in the ME village…

Fortunately, there are a large number of people out there who do really like and appreciate what I/we do in the way of provision of information for doctors and patients, support for patients, campaigning, political and media activity, funding biomedical research studies and research infrastructure such as the ME Biobank

The proof of the pudding is in the fact that the MEA has an excellent collection of trustees, staff and volunteers and is also experiencing very significant rises in income from membership fees, donations, literature sales, fundraising, and research funding donations

Messages of support and thanks appear at both the MEA office and on our own social media pages - where I don't have to deal with these sort of personal attacks - at very regular intervals

CS

 

[Demepivo]

After CMRC meetings @charles shepherd , do you enjoy a few drinks and laughs with Esther & Stephen?

As the joke in Private Eye said, "Treples all round!"

 

[Valentijn]

I am obviously well aware that there is a small and very vocal group of people on PR who do not like me or the MEA

I think you are misrepresenting the situation. It has nothing to do with liking or disliking you personally, and I daresay most if not all appreciate most of what MEA does. But the MEA's attitude toward any point of disagreement is highly dismissive. You don't seem interested in representing patient interests if they diverge with what you think is best. And it's offensive to suggest that such opinions are invalid and unwanted if they do not come from your paying members.

Currently you're the best game in town, and I think you do a very good job. But I think you could do better in listening to patients, and patients deserve to have you do better in that regard. Ideally, it would be nice to have a new patient charity which really does prioritize what patients want. Until then, the MEA is a decent compromise, since what you want generally is in accord with what most patients want.

 

[trishrhymes]

I am obviously well aware that there is a small and very vocal group of people on PR who do not like me

I have not come across anyone here on PR who does not like you or has said anything to suggest they do not like you, and most people here including me appreciate most of what you do.

Please do not paint a disagreement about one aspect of the what the MEA does as a personal attack on you.

I and others have been careful not to attack you personally in this thread, simply to put our case for disagreeing with you on this one issue. As you say yourself this is only a small part of what you and the MEA do, the rest of which is highly commendable and appreciated.

I can't help wondering to whom you are referring.

 

[A.B.]

I am obviously well aware that there is a small and very vocal group of people on PR who do not like me or the MEA

I like what the MEA is doing and appreciate your efforts. I just think that the MEA is making a mistake with the CMRC. It's giving credibility to an organization that claims to serve the interest of patients but is really serving the interests of the BPS crowd. I don't think the CMRC is capable of producing the research that we need, because it would conflict with the status quo.

PS: I think this is rather obvious by now. The whole thing was set up by Wessely. Holgate defends Crawley. Davey Smith calls PACE critics "anti science". MEGA was promoted to patients without disclosing crucial details. The MEGA patient advisor group seems to be powerless. Crawley called criticism of her work "libel" and "anti-science". Do you really think these people have our best interests at heart?

 

[Skycloud]

After CMRC meetings @charles shepherd , do you enjoy a few drinks and laughs with Esther & Stephen?

As the joke in Private Eye said, "Treples all round!"

Do insinuations help? Seems unnecessary to me.

edit to add : There are good arguments on this issue without that.

 

[A.B.]

The BPS crowd has clearly always made a substantial effort to control the narrative.

They can't deny the biological aspects forever, but they can continue to influence what is funded, how findings are interpreted, and which populations are studied. They need an organization like the CMRC to do that. There is plenty of room for ostensibly biomedical studies that ultimately just reinforce the BPS narrative. See the HPA axis papers or "central sensitization" papers. I'm sure they could quite easily morph PEM into some psychosocial problem with selective admission of findings. They will never allow CBT or GET to be threatened by evidence or admit that their career is based on lies. Maybe they will settle for a "biopsychosocial" compromise of medication + psychotherapy + exercise therapy.

The CMRC might say that ME/CFS is 100% biological. I say talk is cheap, actions speak the truth.

 

[arewenearlythereyet]

I am obviously well aware that there is a small and very vocal group of people on PR who do not like me or the MEA

I am at a loss to understand what on this thread or others makes you think this? I am quite shocked actually.

I agree there are a few people passionate about improving the lot of people with ME and may occasionally disagree with the MEA's stance on things. I cant see any personal attack here or anywhere. Have the moderators removed comments I'm not aware of?

If people want things to change are they not worth listening to?

It seems to me this thread has asked a lot of reasonable questions to do with accountability and representation of people that are paying the MEA money.

I notice you haven't replied to any of these key questions?

I just don't see that this is anything to do with liking individuals.

Anyway got to get back to emailing my friends and family in support of the NICE petition.

 

[lilpink]

PS: I think this is rather obvious by now. The whole thing was set up by Wessely. Holgate defends Crawley. Davey Smith calls PACE critics "anti science". MEGA was promoted to patients without disclosing crucial details. The MEGA patient advisor group seems to be powerless. Crawley called criticism of her work "libel" and "anti-science". Do you really think these people have our best interests at heart?

Can't argue with that? (I wish! )

 

[A.B.]

By the way I do see the logic behind what MEA is doing. A patient organization should clearly try to avoid isolating itself and try to build relationships with funding bodies as well as raise awareness of the illness among researchers that previously didn't know about it. There might be a desire to avoid being seen as too militant and play the role of the calm rationalist, which could be important in an environment with researchers that might be put off by politics. I simply don't think collaboration can really work.

 

[emmaj]

It feels like we are hitting our heads against a brick wall. That does not reflect well on the MEA. I think both the CMRC and NICE petitions are linked and aligned, we may discover more directly if we ever find out who is on the NICE review panel or consulted experts.

Given I've been ill for 20yrs it's actually quite tempting to just give up given how little progress there has been, but I'm currently more mildly affected and feel a duty to persevere for the more sick who cannot even get out of bed. I think they must be at the forefront of minds when making decisions. How long has the CMRC existed and what have they done to help the severely affected?

I was a member of the MEA briefly but left in 2009 because I couldn't see any benefit to me personally. However MEA and Action for ME still represent and affect me whether I like it or not so don't you dare dismiss our voice like that.

I am as you can tell very angry with the treatment people with ME continue to get and I expect a charity to at least listen to and appreciate very genuine concerns without resorting to shutting down arguments with 'we'll have to agree to disagree'. You are going to have to do better than that to convince me the CMRC is worthwhile and I believe that's your job, how are Holgate and Crawley good for us? Show us? As people have already said action speak louder than words.

We have been and continue to be treated dreadfully and we deserve better. I for one will be continuing to argue against the CMRC until actions convince me otherwise.

 

[charles shepherd]

I think you are misrepresenting the situation. It has nothing to do with liking or disliking you personally, and I daresay most if not all appreciate most of what MEA does. But the MEA's attitude toward any point of disagreement is highly dismissive. You don't seem interested in representing patient interests if they diverge with what you think is best. And it's offensive to suggest that such opinions are invalid and unwanted if they do not come from your paying members.

Currently you're the best game in town, and I think you do a very good job. But I think you could do better in listening to patients, and patients deserve to have you do better in that regard. Ideally, it would be nice to have a new patient charity which really does prioritize what patients want. Until then, the MEA is a decent compromise, since what you want generally is in accord with what most patients want.

There is nothing to stop anyone setting up another ME/CFS patient support charity here in the UK

In fact, this is what I suggest to people who complain about almost everything that we do!

All you need is a small group of people who are either ill themselves, or are caring for someone with ME/CFS, who are willing to spend huge amounts of their time (and some of their income) each work dealing with all various things that need to be done when it comes to running a registered medical charity……..

 

[charles shepherd]

I have not come across anyone here on PR who does not like you or has said anything to suggest they do not like you, and most people here including me appreciate most of what you do.

Please do not paint a disagreement about one aspect of the what the MEA does as a personal attack on you.

I and others have been careful not to attack you personally in this thread, simply to put our case for disagreeing with you on this one issue. As you say yourself this is only a small part of what you and the MEA do, the rest of which is highly commendable and appreciated.

I can't help wondering to whom you are referring.

OK - let's rephrase this into:

…….a very small group of people who do not seem to like anything that the MEA does and their comments do sometimes get very close to being personal attacks

 

[A.B.]

…….a very small group of people who do not seem to like anything that the MEA does and their comments do sometimes get very close to being personal attacks

Can you give names? It is not clear who you are referring to.

 

[AndyPR]

I am obviously well aware that there is a small and very vocal group of people on PR who do not like me or the MEA

Do not misrepresent me and my concerns in this way please. If you really want to get into Crawley territory where raising concerns is wilfully misinterpreted into being personal attacks then I will withdraw my support for the vast majority of your and the MEA's efforts.

 

[lilpink]

There might be a desire to avoid being seen as too militant and play the role of the calm rationalist, which could be important in an environment with researchers that might be put off by politics

That's the straw man argument promulgated by the BPS school both here and abroad, and yet the more militant and vocal pwme actually get the more genuine and sensible researchers flock to study our disease. As patients we should refrain from repeating this as it does us no favours. And don't forget the ICO tribunal findings which link to this. We must be clear and vigilant about rejecting that card..it's the joker of the pack.

 

[Stewart]

Do not misrepresent me and my concerns in this way please. If you really want to get into Crawley territory where raising concerns is wilfully misinterpreted into being personal attacks then I will withdraw my support for the vast majority of your and the MEA's efforts.

I'm obviously not Charles, and he can obviously speak for himself - but I don't think he was meaning to misrepresent your (or anyone else's) concerns. There is a *lot* of criticism of the MEA on PR of late (much of it to do with the CMRC and some of it probably well deserved) and I for one am grateful that Charles gives up so much of his time to come on here and try to respond to people's questions, concerns and criticisms (which, after all, he is under no obligation to do).

But I think people participating in these threads often forget that there's lots of them and only the one of him. Everybody wants to take the opportunity to pose their questions and make their opinion known (which is totally understandable) but that can - and in my opinion sometimes does - result in threads that read as though everyone is dogpiling on Charles. This - again, in my opinion - has reached the point where its turning into one of those threads.

It's can't be enjoyable to be a lone individual who is regularly on the receiving end of attacks and vilification from multiple critics and it would hardly be hardly surprising if, as a consequence, Charles has genuinely been left with the impression that there are some people here don't like him or the MEA. It's certainly a lingering impression I've been left with after reading many of the exchanges he's voluntarily submitted himself to over the last couple of years.

 

[emmaj]

Alternatively the MEA could just address the concerns.