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

[Valentijn]

@AndyPR - can we get photo shots for evidence of AFME 'likes'

First comment, screenshot of "likes", and screenshot of "loves":

Comment 2 with likes as a pop-up:

Emily Beardall liked nearly every comment that Glen made.

 

[trishrhymes]

Thanks for doing the screenshots Andy.

So we now have evidence that Action for ME think it's OK to abuse ME sufferers who are less than fully on board with the AfME message.

I feel honoured to be part of the hysterical vocal minority. I never knew it was 'bitter hatred' of AfME I was feeling - there was I thinking it was simply sadness and complete lack of trust and respect...

 

[Yogi]

@Valentijn thanks you are a star!!

 

[slysaint]

So AfME made out they were appalled at ME being clubbed in with MUS............so what do they think about this?
http://forums.phoenixrising.me/inde...-2017-a-day-with-the-mupp-ets-and-more.51518/

 

[Chrisb]

Earlier today I was trying to refresh my memory about the alleged links between Living Marxism, Spiked, Sense about Science and the SMC.

Wiki came up with the interesting quote about Spiked. ".....and environmentalism. As regards the latter, a particular Spiked target has been what they see as "exaggerated" and "hysterical" interpretations of the scientific consensus on global warming." Of course they do not have monopoly usage of the word hysterical."

 

[JaimeS]

Given the history of the use of these words this is a cause for great concern for the community which we should not allow and should alert everyone to these disgraceful smears.

I replied; I did not mean to imply that this was in their 'official' statement, but from ppl commenting on their page. I know no one can control who comments on their page! However, it is important to know that this is the justification people are immediately leaping to: patients who dare to protest are unreasonable hysterics.

It's also important to know that they 'liked' the statement.

 

[trishrhymes]

I checked just to make sure they weren't just clicking like on everything. No. They certainly didn't 'like' my comments or those of others who were in any way critical. (I didn't check them all). They did click like on ones that were defending AfME including the ones calling us hysterical etc.

 

[Molly98]

So how do AFME decide which comments go to the top. Many comments with 20, 30, 40 likes a long way down but Emily B and Glen's comments right at the top as most relevant when they consistently have the least likes and are the most unpopular. Or is that because they have received the most responses? mostly disagreeing. So funny how they talk of minority and yet it is so glaringly obvious and evident that their views are by far the minority. Views are views and all valid and everyone entitled to them but they just look completely foolish going on the defensive calling the vast majority the vocal minority when they have virtually no support from other patients and only from Action for ME. They need to take a reality check.

 

[JaimeS]

Or is that because they have received the most responses?

yes, I believe so.

 

[AndyPR]

So how do AFME decide which comments go to the top. Many comments with 20, 30, 40 likes a long way down but Emily B and Glen's comments right at the top as most relevant when they consistently have the least likes and are the most unpopular. Or is that because they have received the most responses? mostly disagreeing. So funny how they talk of minority and yet it is so glaringly obvious and evident that their views are by far the minority. Views are views and all valid and everyone entitled to them but they just look completely foolish going on the defensive calling the vast majority the vocal minority when they have virtually no support from other patients and only from Action for ME. They need to take a reality check.

Essentially Facebook will try to show you what it thinks you will find most "interesting" and comments seem to be worth more in that equation than likes, although I have no idea what the comments to likes exchange rate is. So an unliked but heavily commented on post will generally be the first to be seen, over and above well liked posts that have no comments on them.

 

[Binkie4]

Just seen that there are 2 highly critical comments on the AfME visitor site about the title of the Conference EC is speaking at tomorrow.

If anyone wants to express an opinion or ' a like', the opportunity is there.

 

[trishrhymes]

Whereas the MEA has put the flyer for the 'muppets' conference straight in their news feed. Lots of responses, including one from @charles shepherd saying:

'I will be sending a formal complaint about the title of this study day to the President of the South West Paediatric Club tomorrow morning. Dr Charles Shepherd - Hon Medical Adviser, MEA'

 

[Forbin]

Two months ago, an open letter to the journal Psychological Medicine, co-signed by a substantial number of scientists, and supported by patient organisations in the UK, US and Europe, asked that the journal retract its 2013 paper, Recovery from chronic fatigue syndrome after treatments given in the PACE trial.

As reported by the New York Times, the journal has said it has “no plans to retract the study but is open to publishing a re-analysis of data in any papers it has published.” Therefore signing now will have no impact.

https://www.actionforme.org.uk/news/board-of-trustees-on-cbt-get-and-pace/

 

[snowathlete]

Quoting part of the Action for ME statement:

the field must move forward by bringing in new researchers, more funding for biomedical research, and more effective engagement with policy makers. The focus on the scientific debate around the PACE trial above all else is preventing this from happening.

I disagree with what I think they are saying here. The problem is that while PACE and those who back it remain influential in the UK we will just get more of the same; even if it were true biological research it would be poor quality, methodologically flawed, unethical research. Indeed, PACE supporters are conducting such research right now, today and trying to get funding for even more. Some of it backed by Action for ME. PACE should not be relegated as some kind of side issue as if it exists in isolation to today's research, but rather it should be a continual reference of what everyone involved in ME research must actively avoid producing again.

And regarding this:

As reported by the New York Times, the journal has said it has “no plans to retract the study but is open to publishing a re-analysis of data in any papers it has published.” Therefore signing now will have no impact.

As a doctor once said to me regarding a drug I was prescribed for pain but which I did not think likely to help and therefore not worth swallowing, "It may or may not help your pain, but I can guarantee the drug definitely won't have any effect whatsoever if it stays in the box." I could not argue with his logic.

What harm is there is signing it? It's a signature, for a position which they vaguely suggest they agree with. Not even that - an email or phone call confirming support, in reality. If they believe that Psychological Med paper should be retracted then they should sign it. If nothing else for their own reputation. There is no logic to their position unless they want to avoid signing it, which they obviously do. I suspect this is due to personal relationships between people at AfME and those involved with, and supporting, PACE. I have never actually seen Action for ME take any genuine action toward resolving the problems of PACE in patients interests, certainly not of their own back, they always avoid it and only do minor things when forced into it.

And this despite them owing patients a huge debt, more than any other ME charity because they supported the PACE trial when it was carried out and ignored patients and researchers who pointed out the problems with it once it was published, offering no help or support until very very late in the day, and then only superficially changing their position once it was completely clear PACE is ultimately living on borrowed time.

I think a year or two down the line we will review what AfME have done to further expose PACE and the influence it and it's supports have on new research and we will see that AfME have taken no action of any genuine substance.

 

[user9876]

I disagree with what I think they are saying here. The problem is that while PACE and those who back it remain influential in the UK we will just get more of the same; even if it were true biological research it would be poor quality, methodologically flawed, unethical research

They could of course be saying that "The focus on the scientific debate around the PACE trial above all else is preventing this from happening." meaning that until PACE is accepted those who support it will ensure all applications to the MRC and NHIR will be blocked by reviewers. But that would take some political awareness from AfME and even then this is an attitude that should be publicly challenged.

 

[Dolphin]

The MRC research strategy in 2003 said that you didn't need to know the causes of the condition to treat it (it was clearer in the draft strategy, they toned down the language following their consultation). They had been convinced that the condition could probably be treated using rehabilitation methods. This allowed them to say that studying causes was not that important.

It is easy to believe how this could have led to studies looking at aetiology and the pathophysiology having difficulty getting funding.

Basically the PACE Trial/GET/CBT philosophy can make it more difficult for biomedical research to get funding. Money is scarce so other illnesses can easily be seen as more worthy of funding.

By the way, it was pretty clear how the MRC research strategy was likely to go with the biased working group they announced in 2002 but some ME charities were too weak to challenge it. AYME did make a minor complaint saying there needed to be a children's expert so a crappy person was added. The real bias on the panel was that there were 3 people associated with the CBT approach/Sharpe/Wessely.

 

[Sean]

The focus on the scientific debate around the PACE trial above all else is preventing this from happening.

'Nothing to see here, folks. Move along.'

 

[snowathlete]

They could of course be saying that "The focus on the scientific debate around the PACE trial above all else is preventing this from happening." meaning that until PACE is accepted those who support it will ensure all applications to the MRC and NHIR will be blocked by reviewers. But that would take some political awareness from AfME and even then this is an attitude that should be publicly challenged.

Possibly, but then those kinds of reviewers are going to block meaningful biological research anyway, as they always have. I think it's more about funders now not wanting to go near ME, and particularly those associated with PACE because of all the controversy. MEGA got rejected and I'll bet the controversy around PACE, and with PACE supporters involved in that study, planning poor quality research of the same level, was a factor in that decision. I think the only way to fix that is to actively let go of PACE, not just stop supporting it publicly, but to properly sink PACE and those who supported it. Then we can move forward with research in the UK, but right now PACE remains a problem even in it's slow and inevitable tumble and death.

PACE is like a big damp problem in a house, no one is going to buy the house till the damp and mould and all traces of it and removed and cleaned up and the cause dealt with. Building a new extension on the house is pointless till you deal with the rot, it won't sell the house having that new extension and it will ultimately just suffer from the same damp problem.

 

[Jo Best]

The focus on the scientific debate around the PACE trial above all else is preventing this from happening.

Extracts below from letter to 'Mainstream Funders' accompanying the counter-petition Opposing MEGA:
https://www.change.org/p/opposing-m...idence-in-mega-research-for-me-cfs/u/19240607

As the MEGA team have consistently refused to answer all questions about PACE, and are even relying on it for funding of current treatment trials, we submit that the MEGA applicants are attempting to build a research project on crumbling foundations and should receive no further funding under any guise.

Patients and professionals alike were misled over the PACE trial from its inception to the present day. Children are among the patients suffering daily from the consequences. We cannot afford as a civilised society to repeat nor perpetuate this mistake.
Thus, we submit this letter and Opposing MEGA petition, along with its comments, as an outright rejection of calls by CMRC/MEGA for mainstream research funding and request that you ensure this letter and content is brought to the attention of all personnel in your organisation with responsibility for research funding applications.

 

[slysaint]

http://voicesfromtheshadowsfilm.co.uk/news-2/

"Action for ME recently announced funding for research into the incidence of severe ME, but they are not yet making public what criteria will be used to make a diagnosis of ‘severe ME’. According to Dr Crawley’s statement on AfME’s website and facebook, 3,400 paediatricians and doctors around the UK will be contacted to ask if they have seen a case of severe ME in the previous month.

The researchers will request “information to determine if other diagnoses have been considered (eg. anxiety, depression, eating disorders).” I have seen, with my own eyes, hospital notes recording a very influential CFS paediatrician’s advice that neither tube feeding nor paralysis are consistent with a diagnosis of severe CFS/ME.

So I am concerned that this research could have the potential to influence paediatricians and doctors around the UK, to accept a similarly restricted definition of severe CFS and ME.

My experience is that such severe ME in young people is often preceded by serious mismanagement of their ME having taken place: the consequence of a wrong diagnosis or ignorance. This happened to my daughter’s friends Lynn Gilderdale and Naomi, as well as the child ‘B’ in Voices from the Shadows, Sophia Mirza and other young people we know."