AfME Board of Trustees statement on CBT, GET and PACE - 16th May 2017

[NelliePledge]

Check out how much money Sonya Chowdhury and Emily Beardall are gathering together from unsuspecting and innocent donators. I believe this is under false pretences as they are not working for people with ME but against pwME as seen here and instead for various fatigue/tiredness problems and for the PACE researchers (DWP and insurers) and Esther Crawley.

https://twitter.com/i/web/status/863000514337943552

https://www.justgiving.com/fundraising/sonya-chowdhury

That justgiving page should be shut down. It is so unethical.

woah hang on she hashtagged millions missing when they didnt mention it in any of their publicity last week

 

[AndyPR]

The entire (so far) list of comments by the fully indoctrinated member of AfME - apparently Tuller is out to get AfME....
[click to see full image on each]

 

[Yogi]

woah hang on she hashtagged millions missing when they didnt mention it in any of their publicity last week

Yes - they didn't publicise MillionsMissing campaign but used various other hashtags. #MEAwareness Day #MEAwarenessWeek and #MEMatters

https://twitter.com/i/web/status/861507168239058948

https://twitter.com/i/web/status/862975640378589184

However when getting people to give them money they jumped on the #MillionsMissing bandwagon.

I didn't fully appreciate what is going on here at first.

If you use #MillionsMissing for your donation efforts then it should be to go to MEAction or the #MM campaign not for a psychosocial/PACEtrial/Esther Crawley/Peter White/CMRC/MEGA/DWP supporting charity.


This is really really unethical and another AFME scam uncovered.

Can we notify everyone at MEAction about this?

 

[MEMum]

andy I can still see posts and have just posted another comment

apart from 2 they are all negative

They seem to be limiting to only showing 15 at a time.

 

[Large Donner]

This resulting anger towards the charity for not signing was totally manipulated, in my opinion. It turns out the letter has made no difference anyway,

I find this a bit delusional I am sorry to say. This is a "why is it always me" mentality. Its obvious why its always AFME being challenged and not all the other charities, its because they are so poor and have a conflict of interest because they are being influenced and manipulated by the BPS school.

Why would Tuller "just have it on for them" for no reason? The notion that the letter has "made no difference anyway" is not good enough reason to not sign it. The letter received a standard corporate response and did not address the issues as detailed to Holgate. This is now on record and speaks volumes of the CMRC, Holgate and his bias for Crawley.

On top of all that to remark that the letter has made no difference shows ignorance of the fact that this whole debate is far from over and the letter and the debate and the contact between people like Tuller and Holgate is far from over.

The Holgate response speaks volumes and contrary to this persons claim from AfME, it has made an enormous difference in terms of showing the CMRC for just what it is. If AfME cant see that I just find it astonishing.

This is the beginning of a process not the end.

 

[alex3619]

This is the beginning of a process not the end.

Getting bad research retracted can take ten years or more. In terms of major impact toward retraction of PACE we are only in year two. Prior to that it was mainly just patients who were pointing out the flaws.

 

[Yogi]

Now AFME people are using the PACE trial researchers strategy of smearing those of us against PACE trial as vexatious vocal minority:

Glen Buchanan It does not surprise me one tiny bit to see the same vocal minority leap onto this post and fling all sorts of unwarranted, unsubstantiated criticism at Action for M.E. . I could have listed the names before even opening the comments. They have been lurking and awaiting this statement; poised to vent their bitter hatred of the charity based on the past. Frankly, if you feel so strongly about how awful you believe they are why do you claim to be members or 'like' this page. Your inputs here are NOT helpful to the cause; we need to all work together to make change happen not just criticise unconstructively. As always these few make out they represent a majority of people with M.E. and the majority of members of the charity. They do not represent me for one - you do not speak for the majority. Many of us are right behind Action for M.E. - a charity who supports thousands of us, who are there with advice, support and are actively campaigning for us. Because they do not do exactly as the few, joyously angry, people commenting here say they should, does not make them bad or wholly wrong. I volunteer for them, pay my monthly membership fees from my little income because I know the people there are on side and good. They listen to me (even when I offer constructive critique), they care, they understand - they are right on our side. Please read the statement and form your own opinions, don't be led by the furious minority. As it clearly says in the statement "The fact is that there are no treatments that offer reliable and significant improvements for people with M.E., and we still face the issue of not knowing enough about the biology of M.E. to target treatments appropriately. Lack of investment in research and specialist healthcare provision for M.E. leaves large numbers of people with M.E. unable to access the support they desperately need. This is absolutely not good enough, and it must change." - That's their clear, strong position; they are fighting for us, we need to work with them and support their hard work, not continue to whinge about mistakes from the past, made by people who no longer work for the charity. Time to MOVE ON and focus on getting a better lot for all the strong people living with a horrid illness and appalling treatment.
1 · 38 mins
Hide 13 Replies

Kal Englehart To me, it seems quite unfair for you to describe people as 'joyously angry'. I've seen the huge ammount of suffering and hardship caused to those who have been fighting to ensure patients are provided with accurate information about treatments, and that the problems with PACE are not just brushed under the carpet. Their sacrifices have allowed for some real progress to be made, yet Action for ME continues to refuse to stand up against bad science. This is angering, and I am not remotely joyous about this, I am very sad. It is heartbreaking to think that Action for ME's inaction is likely to help drag on this issue, and the suffering it causes, for years to come.
3 · 31 mins

Glen Buchanan Kal Englehart there does seem to be a real joy in being angry from a minority - and the statement does make it perfectly clear that "Action for M.E. shares these concerns" and they go on to say "it is vital that valid questions, raised about the science conducted as part of the PACE trial, be addressed as a matter of urgency, and that the experiences of the patient community are not ignored". They are saying they agree with our concerns and want answers. What further action, exactly, do you want from them? Besides a letter that has been and gone making no difference. Sometimes I personally want them to express my anger and slap a stupid journalist or ignorant 'researcher' in the face with a chair - I too get so angry/upset at some of the stupidity/rubbish out there directed at us people with M.E. However, at the same time I see that a charity needs to be balanced, not hysterical, but still assertive. Most importantly they have to encourage more researchers to work on our cause, and they also have to have a strategic vision that moves things forward and works to make progress rather than just keeping on looking back and apologising to a minority who refuse to just move on.
23 mins

Jackie Goold how can anyone move on while PACE still stands and determines the NICE guidelines that determine how we are treated by the NHS
1 · 20 mins

Glen Buchanan Jackie Goold Absolutely Jackie, that rubbish, overly influential research should not form part of any new NICE guidelines - and I know Action for M.E. are going to be pushing hard to get more up to date, better informed research to influence these. Their statement makes this clear too - "a review of the NICE guideline must take full account of emerging biomedical research, the views and experiences of people with M.E., and clearly reflect nuances around findings and re-analysis related to the PACE trial"
17 mins

Jackie Goold So what is their problem with signing the letter like MEA did
1 · 16 mins

Glen Buchanan Jackie Goold well tell me why you and a minority think that letter is the be all and end all of the utmost importance? Why is one letter (and one that made no difference) so important and why does them not being part of this allow people to completely ignore all of the hard work Action for ME do for us and the fact that they are right on our side. That letter is not the only weapon to use - take a look at all the work this charity is doing for us and you'll see that. If the MEA signing one particular letter matters so much, perhaps join them, like their page and help them make the difference they make too.
12 mins

Di Kirk Signing a letter calling for the retraction of the PACE Trial is a very current, and a very vitally important issue, it is not looking back or in the past. People are currently being harmed and given the wrong information by Doctors whose information originates from this trial. We need to protect M.E sufferers, particularly those newly diagnosed who know nothing of this controversy. I do not find any 'joy' in saying this Glen. I am saying it because I am very concerned.
12 mins

Jackie Goold oh and Ive never been vocal before as of today Ive joined the so called angry minority
10 mins

Kathryn Fenn Glen people are free to read AFMEs long waited position on this important matter and comment. Perhaps the fact just you and Colin are taking another side speaks volumes?
10 mins

Glen Buchanan Di Kirk Fair enough and you express yourself calmly and without hysteria, unlike some others. Everyone is entitled to their opinion. I added my voice to this because I am not going to be represented by the same few people who do take joy in venting anger rather than contributing anything constructive or helpful. Not everyone agrees that one letter is the be all and end all.
9 mins

Kal Englehart I don't see any joy from those patients who are so legitimately upset and frustrated about Action for ME's failure to stand up against bad science - could you provide a specific example? I am concerned that you may be being guided by unfair prejudices.There has been a long history of critics of the PACE trial being smeared, but whenever specific examples are demanded, they appear to be very weak. I'm not sure that you understand the purpose of the open letter. Robin Murray is a close friend of Simon Wessely: no-one expected this one letter to lead to instant retraction. It was about applying pressue and gaining publicity - things that would be helped by having Action for ME, as the patient group involved in PACE, sign. Action for ME should sign the open letter, it should state that it believes this seriously flawed paper should be retracted. I'm surprised that you see their evasive comments as strong and clear.

You say:

"the statement does make it perfectly clear that "Action for M.E. shares these concerns"

What specific concerns does Action for ME share? The first two bullet points are utterly besides to point for most people's concerns about the PACE trial - they are either avoiding the key issues, or do not understand them. The concern that the recovery paper still has not been retracted? Do they think that this paper should be retracted? Their statement leaves me none the wiser. Are they concerned that people will have been misled by claims like that from Esther Crawley that the PACE trial indicated a recovery rate of 30-40% for CBT and GET? If so, what do thewy think should be done about this? Are they concerned that Esther Crawley has tried to portray her critics as "anti-science"? I want Action for ME to start taking clear positions on these important specifics, not just releasing vague statments that "Action for M.E. supports evidence-based research" - what exactly does this mean? Are those claiming PACE shows CBT and GET are effective treatments for CFS doing "evidence based research"? Or spinning the results from junk-science?
9 mins

Glen Buchanan Kathryn Fenn it's not just me and Colin though is it Kathryn - you're distorting the facts to support your own agenda. I'm glad us few are expressing our view here against the joyously furious minority who make out they represent us all. They do not. They are so motivated by their anger that they post, when many others read this and simply don't get involved because all that unconstructive venom is highly off putting for those who are here to support Action for ME and believe in the good work they do everyday.
5 mins

Glen Buchanan Kal Englehart I'm not even going to waste my energy to read all that. I am simply not going to agree with you or anyone with their unconstructive, unhelpful anger who refuse to see good or read the positive, strong points in Action for M.E.'s statement

Colin Barton “The PACE trial: It's time to broaden perceptions and move on - The continued critiques of the PACE trial highlight how differing beliefs about the causes of chronic fatigue syndrome still influence how scientific studies in this area are accepted and evaluated. Causal beliefs about chronic fatigue syndrome and a modern version of Cartesian dualism are important in understanding the reaction to the PACE trial. The continued debate on the PACE trial seems to miss the fact that science is incremental. An unfortunate outcome of the PACE controversy
and intimidation of researchers may be less research in the area. It is time to move on from criticism and collect more data on effective treatments.”
http://journals.sagepub.com/.../10.1177/1359105317703789
1 hr

Kal Englehart That Petrie and Weinman were reduced to just promoting prejudices about patient's motivations shows how without substantive argument those still attempting to defend PACE truly are. That researchers have tried to present information requests and debate as "harassment" just reflects the shameful attitudes to be found within some areas of medical research.
1 · 22 mins

 

[JoanDublin]

How many different ways has that chap Glen mentioned 'one letter, making no difference' etc? There's a right NLP whiff off his posts. Along with a whiff of desperation too....

 

[SamanthaJ]

I don't know about anyone else, but I don't feel "joyously angry". More like: disappointed yet not surprised, mystified yet resigned.

I don't really understand what's going on at AfME, where the support for Crawley and BPS is coming from, given that their new medical advisors don't seem to have that background, but they can't really deny it's there.

 

[BurnA]

Did they really thank the DWP in a tweet?
WTF.

 

[lilpink]

I don't know about anyone else, but I don't feel "joyously angry". More like: disappointed yet not surprised, mystified yet resigned

Personally I'm livid my life is being jerked around by these morons. But I expect that's vexatious!

 

[Ysabelle-S]

Denial ain't just a river in Egypt.

I'd comment on some of the ridiculous and unpleasant comments (lurking, vocal minority, etc) embedded here and on other pages, but I have some projects to get on with....

 

[Luther Blissett]

How many different ways has that chap Glen mentioned 'one letter, making no difference' etc? There's a right NLP whiff off his posts. Along with a whiff of desperation too....

Some people just don't like conflicts. They use psychological defenses to try to persuade themselves of the bad faith of people raising problems and being angry. (Why can't we all just get along types)

The kind of reasoning he uses is why the statement was fashioned just like it is. Try to insert enough wiggle room to be all things to all people.

The problem for them is that often people have legitimate reasons to be angry and confrontational.

Other people are just authoritarians who believe that the people with power should never be challenged.

 

[SamanthaJ]

Personally I'm livid my life is being jerked around by these morons. But I expect that's vexatious!

Yeah, it's the 'joyous' part I'm not feeling, really.

 

[NelliePledge]

now he's saying we're hysterical

 

[Daisymay]

personally I don't think it goes nearl far enough. They need to clearly state that the scientific evidence

Personally I'm livid my life is being jerked around by these morons. But I expect that's vexatious!

Well I'm really vexatious too!

 

[Ysabelle-S]

now he's saying we're hysterical

Interesting word usage in his posts. That word 'hysterical' (considering this is an illness that's been portrayed in that way, and which mostly affects women) is particularly tone-deaf. He also talks about 'the same vocal minority' thereby mirroring the abusive language of those from the BPS school who have deliberately sought to undermine our voices and legitimate concerns and criticisms. He cannot possibly be unaware of the inappropriate nature of that word usage, surely? He was also talking about people 'lurking' and waiting to condemn, etc. I don't feel the people defending Action for ME in those posts speak for me at all, or for the patient population generally. They are speaking for their pals at the charity. Action for ME has not made the stand patients had the right to expect of it.

 

[Yogi]

Glen Buchanan said: As always these few make out they represent a majority of people with M.E. and the majority of members of the charity. They do not represent me for one - you do not speak for the majority.

Exactly. AFME does not speak for me or thousands of others. So why do they represent pwME in all the parliaments and with policy makers. AFME does not speak for the majority either!!!

This could easily be resolved if AFME called themselves Action for Tiredness. The good ME charities could then get on with proper research. AFME are deliberately in collusion with Simon Wessely, Peter White etc are muddying the water and conflating different illnesses. Then when the inevitable anger hits they lash out and blame patients (just like their pals the PACE psychiatrists who they are in bed with).

 

[NelliePledge]

Some people just don't like conflicts. They use psychological defenses to try to persuade themselves of the bad faith of people raising problems and being angry. (Why can't we all just get along types)

The kind of reasoning he uses is why the statement was fashioned just like it is. Try to insert enough wiggle room to be all things to all people.

The problem for them is that often people have legitimate reasons to be angry and confrontational.

Other people are just authoritarians who believe that the people with power should never be challenged.

Im a why cant we all just get along type Luther this guy Glen is really the angry agressive one

 

[Yogi]

See what I mean. AFME defender insulting anyone who points out hypocrisy of AFME as hysterical.

Hil Patten There is no joy in being severely ill and disabled decade after decade, and having a charity meant to represent us refuse to condemn the very 'treatment' that made us so ill in the first place.
6 · 1 hr

Glen Buchanan Hil Patten . I respect we don't agree but I feel this is the kind of hysteria that is really unhelpful - what made you ill in the first place is an illness called M.E., one that Action for M.E. fights hard to improve understanding and support for. Why do you not acknowledge all the good they do, simply because they won't issue statements that say exactly what you want them too. They represent thousands of people not just a minority who demand very specific actions and wording of statements to their own particular demands.
1 · 1 hr · Edited

Kate Behrend I acknowledge the good work that AfME do, but the problem is that when their strategic policies involve the continuation of a pattern of 'diplomatic stances' in their dealings with BPS proponents, the results are that this latter group is further empow...See more
2 · 38 mins · Edited

Jackie Goold how do you know we are a minority? also what gives you the right to call other people with ME hysterical
1 · 43 mins

Kate Behrend I find your "hysteria" description in relation to what has happened to Hil, and many others - and what will continue to happen to many more unless the approaches pushed by BPS proponents are brought to end - shockingly dismissive.
43 mins

Jackie Goold sorry that last one for Glen Buchanan
42 mins

Glen Buchanan Jackie Goold hysteria is quite different to calling 'other people with ME hysterical' - don't twist my words, they are very different words.
33 mins · Edited

Glen Buchanan Kate Behrend I called her expressed opinion hysteria and didn't use that to describe what has happened to her or about her experience - don't twist my words to try and make your right to an opinion seem superior to mine. I live with debilitating M.E. t...See more
32 mins · Edited

Kate Behrend Hmm - I think the differentiation is a pretty subtle one Glen...
32 mins

Glen Buchanan Kate Behrend I'm not interested in arguing with you. You will continue to be angry at anyone who dares hold a different view regardless. Have a nice day.
31 mins · Edited

Moosie Van Poosie Glen Buchanan Gosh I'm never really well enough to post but I have to say I read nothing 'hysterical' in Hil Pattens post.
30 mins