UK Action for ME - policies, actions and publications - discussion thread

Hutan

Hutan

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A number of earlier threads have commented on AfME documents and webpages:

This thread has been split from the Action for ME news thread
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Sonya Chowdhury's response to the complaint looks good and I agree that AfME have better things to do now than deal with this complaint.

But, I do note, clicking through to the AfME page about the PACE trial, that it could be a lot better. It still gives an impression of some fence-sitting. Perhaps the page could be reviewed in the light of the new NICE guideline and re-written? Mentioning that the PACE trial and other trials of CBT and GET were rated low or very low quality by NICE would be good.

Some examples of the current problems:
Under a large orange heading 'What did the PACE trial find?' there is this
Findings published in 2011 indicated that patients treated with CBT and GET (alongside specialist medical care) experienced moderate improvement in self-rated fatigue and physical function, more than those who used adaptive pacing therapy or specialist medical care alone.

Follow-up results published in 2013 indicated a 59 to 61% improvement, and 22% recovery, for patients who used CBT and/or GET compared to adaptive pacing therapy and/or specialist medical care. It should be noted that "recovery" did not mean that the patient returned to the levels of health and fitness they had before they were diagnosed with M.E.
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There is no need to give the percentage improvements and recovery in the second paragraph. The first paragraph has already said that the trial found 'moderate improvement'. I think there is a problem with how the percentages are presented, as the improvement and recovery rates for adaptive pacing therapy and/or specialist medical care are not given for comparison. Many people reading it will assume 22% of people recover compared to no recovery without CBT and/or GET. Later discussion does not give the reworked improvement and recovery rates in percentage terms.


These cognitive responses are associated with unhelpful behavioural patterns, including avoidance of activity or all-or-nothing behaviour – a pattern of excessive resting alternating with pushing too hard or being overactive when well.” An example of a “fear-avoidance belief” is given as follows: “I am afraid that I will make my symptoms worse if I exercise.”

However, studies have demonstrated that even mild exercise can provoke symptoms in some patients – so fears about the consequences of exercise are well-founded.
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The objection to CBT seems to be mostly that negative impacts of exercise can be real, rather than 'CBT doesn't work'. The problem with that is that it leaves lots of scope for clinicians to say 'oh, of course we work collaboratively with the patient to have them exercise in a way that doesn't create negative impacts'.


the PACE trial did not use objective measures to assess the effectiveness of CBT and GET, but instead relied on subjective measures, ie. reporting by patients, which can be unreliable
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Little is said about the fundamental problem of subjective reporting in an unblinded trial where treatments aim to achieve a change in the way participants view and talk about their symptoms. In contrast, there is a great deal written about various definitions of ME/CFS.


It was never our intention to contribute to any stigma or misunderstanding about the illness and I sincerely apologise to those who feel that, in not speaking out sooner and more strongly, we have caused harm.
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This is sort of a 'I'm sorry that you are upset' apology, rather than the 'I'm sorry that we contributed to the harm' apology that is required.


We fully support treatment approaches which:
  • aim to reduce and stabilise symptoms before any appropriate increase in activity levels is attempted
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This sounds a lot like AfME suggesting that an increase in activity levels is a treatment approach.

recruitment of the review team, including consumer authors; this includes Prof Julia Newton, and her role in this will be undertaken independently from her work with us as our Medical Advisor.
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This relates to the Cochrane review. I'm not sure if Prof Julia Newton is still an AfME Medical Advisor, but Prof Newton's ongoing support for a treatment approach that is GET in everything but name has been established.
 
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Hutan said:
I'm not sure if Prof Julia Newton is still the AfME Medical Advisor, but Prof Newton's ongoing support for a treatment approach that is GET in everything but name has been established
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Apparently Dr David Strain was appointed to the position in June:
Dr David Strain is our Medical Adviser and was appointed in June 2021. Dr Strain brings a wealth of clinical and academic experience to our charity, as Senior Clinical Lecturer at the University of Exeter Medical School and as a consultant to the Devon M.E./CFS specialist service. He leads the British Medical Association’s Covid-19 response team and has repeatedly drawn parallels between Long Covid and M.E./CFS, calling for research to benefit all post-viral illnesses.

Sonya Chowdhury, Chief Executive, Action for M.E., says:

“Dr Strain brings considerable experience and insight to the charity. As a physician, he has supported people with M.E. and Long Covid and has a good understanding of both health and research, which will strengthen our work and the support we provide to people with M.E. His appointment is an incredibly positive step and I hope the community will join me in welcoming him to the role.”
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https://www.actionforme.org.uk/get-information/about-us/president-patrons-and-advisors/
 
I agree the complaint to the Charity commission is not useful at this time. AfME have changed significantly, and I would not like their funds and staff time now to be diverted into dealing with this complaint.

I also agree that AfME still have a lot of work to do with rewriting their information about ME and treatments, as Hutan has highlighted above. I have tried twice to get them to recognise the harm their ongoing misinformation is doing. They have responded positively to my letters, and did eventually withdraw their return to work booklet after pressure from others as well, but the changes they made to the pacing booklet were, in my opinion slow and inadequate - it did improve significantly, but is still far too long and confusing. I hope the change from Julia Newton to David Strain as their medical advisor will help with speeding up improvements in their materials.
 
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The timing is very unfortunate but perhaps if AfME had been a little quicker off the mark and proactive in getting its house in order and had dealt with the problems properly when they were raised before then this wouldn't be happening now.

If AfME find themselves stretched a bit thin now or distracted because of this then they they have to shoulder some of the responsibility for that. They had plenty of opportunity to set things straight.

Edit - it wasn't me btw.
 
Invisible Woman said:
The timing is very unfortunate but perhaps if AfME had been a little quicker off the mark and proactive in getting its house in order and had dealt with the problems properly when they were raised before then this wouldn't be happening now.

If AfME find themselves stretched a bit thin now or distracted because of this then they they have to shoulder some of the responsibility for that. They had plenty of opportunity to set things straight.

Edit - it wasn't me btw.
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I agree and feel like AfME still have more to learn from their PACE involvement and why they got things so wrong there. My first thought is also that this complaint is not the best way of addressing that, particularly now. I don't know though - it could be that it does prompt AfME to do some housecleaning. I doubt that the charities watchdog is well placed to address the complaint, but maybe if it encourages AfME to think more about what went wrong then that will be useful. Their response didn't seem great to me. I often find that, looking back, AfME were even worse than I remembered after PACE came out. They were actively helping cover up problems for a long time - when was Alistair Miller still a medical advisor until? We're still lacking much of an explanation of why they acted as they did, and what they've changed to make sure similar problems don't happen again in the future.
 
Esther12 said:
I agree and feel like AfME still have more to learn from their PACE involvement and why they got things so wrong there. My first thought is also that this complaint is not the best way of addressing that, particularly now. I don't know though - it could be that it does prompt AfME to do some housecleaning. I doubt that the charities watchdog is well placed to address the complaint, but maybe if it encourages AfME to think more about what went wrong then that will be useful. Their response didn't seem great to me. I often find that, looking back, AfME were even worse than I remembered after PACE came out. They were actively helping cover up problems for a long time - when was Alistair Miller still a medical advisor until? We're still lacking much of an explanation of why they acted as they did, and what they've changed to make sure similar problems don't happen again in the future.
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I think one possible lesson relates to having CEOs like Chris Clark who wrote the letter supporting funding for the trial running patient organisations. “Patients” can then be said to support a particular course of action when it wasn’t patients who made the decision.

It’s one of the things that have motivated me to do so much voluntary work running a patient organisation over the years: I am wary of decisions made by paid staff in the name of patients. I’m not saying paid staff should never be employed but there are risks and the bigger the organisation, the harder it can be to have patients having a big say regarding making the decisions.

The UK ME Association also had problems with a CEO in the early 2000s before the “coup” and indeed AYME did too. Saying that, I’m happy enough with Sonya.
 
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Trish said:
I assume the buck stops with the Trustees at the time it acted wrongly. I don't see how Trustees (or staff) appointed after that time can be held responsible.
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What happened with AfME and the PACE trial happened. If they had been more proactive in clearing up the mess they contributed to I think most would be prepared to forgive and move on.

However, as we know some of their information leaflets are still very problematic and are probably causing harm today. That isn't really forgivable. We are far beyond the stage when all of AfME's documents and statements should give a consistent and clear message about GET, CBT and the likes.

Until that happens then it is understandable that someone might feel driven to try to tackle them in some way.

Sean said:
Yes, let's not make AfME the scapegoat for all the other more serious failures across the board.
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Agreed. The "but everyone else was doing" line shouldn't be a defence either & AfME have let this situation drift on for far too long. They have made moves in the right direction but at a glacial pace.

Andy said:
And if this complaint doesn't get used in attempt to put people off from participating in DecodeME then I'll be surprised, there will be certain BPS supporters on social media who must have been delighted to see this news. I doubt that the complainant, assuming they are well intentioned, factored any sort of knock-on effect into their calculation of how worthwhile it actually was.
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I'm not sure it will have that effect. I hope not. DecodeME is an altogether different beast from PACE and isn't looking to "sell" a treatment. The BPS crowd will find a way to take potshots given an excuse or not and if they do it might backfire & just be free advertising? :emoji_fingers_crossed:
 
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Trish said:
Or perhaps because AfME has still only made what looks like a half hearted attempt to distance itself completely from the actions of its predecessor Trustees and staff. And to make crystal clear the fact that both PACE and FINE, contrary to the claims of the researchers, demonstrate once and for all that CBT and GET don't work.

The most positive outcome, I think, of this action would be a thorough and swift cleanup of all AfME's publications, and distancing itself completely from the people from the Bristol clinic who, as I understand it, have continued to play a large part in their production of materials.
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This has been the essence of the problem for years after Chris C's departure......


https://www.s4me.info/threads/correspondence-from-the-dwp-for-2004.2771/
 
Ariel said:
Does anyone know why on earth this is? :(
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Not really.

Some attempt was made to sort out some of the documents. AfME reps did sign up here and did enter into some discussion with us.

A leaflet was withdrawn, I think.

Unfortunately, there didn't seem to be much urgency and they didn't really seem to grasp just how problematic the wording of some of their stuff is.

They did say that updating the documents would take time and resource and that's true. However they could have stuck a note at the top of each one clearly stating the document was due to be reviewed and giving a clear statement about the dangers of increased activity. They didn't do that and as far as I know some of their documents remain problematic.

I wonder if some of it is due to trying to keep everyone happy and, unfortunately, the cost of that is borne by patients. It could also be that some of the staff reviewing documents don't fully appreciate the problems, which is a big problem in and of itself.
 
Invisible Woman said:
Not really.

Some attempt was made to sort out some of the documents. AfME reps did sign up here and did enter into some discussion with us.

A leaflet was withdrawn, I think.

Unfortunately, there didn't seem to be much urgency and they didn't really seem to grasp just how problematic the wording of some of their stuff is.

They did say that updating the documents would take time and resource and that's true. However they could have stuck a note at the top of each one clearly stating the document was due to be reviewed and giving a clear statement about the dangers of increased activity. They didn't do that and as far as I know some of their documents remain problematic.

I wonder if some of it is due to trying to keep everyone happy and, unfortunately, the cost of that is borne by patients. It could also be that some of the staff reviewing documents don't fully appreciate the problems, which is a big problem in and of itself.
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https://www.s4me.info/threads/occup...igue-syndrome-a-national-guideline-2006.2604/

'It looks like Action for ME's Chris Clarke bears major responsibility for all this. Ira Madan said that he had recommended one of the two external assessors (White & Sharpe).

I pulled out all their summaries of RCT & systematic review evidence they had on interventions leading to improved return to work in the appendix of their guidelines - there wasn't much:

Deale 2001:


56% of the CBT group were in full or part-time employment, in comparison to 39% of the relaxation group.


Mean number of hours worked per week: CBT group – 35.57 Relaxation group – 24


Mean number of relapses since completion of treatment: CBT group – 2.58 Relaxation group – 4.08

Fulcher:

[No mention of between group differences] 66% of patients who completed exercise treatment were working or studying at least part-time, compared with 39% of all 66 patients before treatment (95% confidence interval of difference 9% to 44%).

Morantz [systematic review]:

1. Some CFS patients who underwent a variety of interventions ranging from no treatment to individualised rehabilitation programmes were able to return to work, but the sample sizes are too small and the study designs too disparate to allow comparisons of different treatments in their association with returning CFS patients to work.

Prins:

Although at 14 months CBT was significantly more effective than both control conditions for fatigue severity, differences in the time spent working in a job did not reach the 5% level of significance.

Ross [systematic review]:

Only CBT, rehabilitation and exercise therapy interventions were associated with restoring the ability to work. No specific patient characteristics were identified as best predictors of positive employment outcomes.

Note: The Morantz (p.48) and Ross papers used the same data, although Morantz was published in 2003 and Ross in 2004. Despite using the same data, the papers have drawn slightly different conclusions.

Huibers:

There was no significant difference in outcomes between the experimental and control groups. Outcome measures were fatigue severity, self-reported absenteeism, registered absenteeism and clinical recovery. These were assessed at four months, eight months and 12 months. As study population was heterogeneous with only 44% of the employees meeting criteria for CFS at baseline. In addition, the duration of CBT was shorter than other studies which have shown CBT to be effective in CFS.

Seems a bit weak to add up to this in their summary:

Key findings of the review:

• Cognitive behavioural therapy and graded exercise therapy have been shown to be effective in restoring the ability to work in those who are currently absent from work.'
 
Suffolkres said:
'It looks like Action for ME's Chris Clarke bears major responsibility for all this. Ira Madan said that he had recommended one of the two external assessors (White & Sharpe).
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Sure, but we had discussions with them on here last year. Could have been the year before...definitely well after Chris Clarke.

To move on from what they believed then and any mistakes that were made they need to be very clear & consistent about what they believe now.
 
Invisible Woman said:
Sure, but we had discussions with them on here last year. Could have been the year before...definitely well after Chris Clarke.

To move on from what they believed then and any mistakes that were made they need to be very clear & consistent about what they believe now.
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I absolutely, agree and it is very much that there have been mixed messages put out there over recent times.........
 
Trish said:
The most positive outcome, I think, of this action would be a thorough and swift cleanup of all AfME's publications [...]

I trust Sonya to be doing her best to move the organisation forward in a good way, and commend her involvement in DecodeME and the PSP, and some of the other actions AfME does to support pwME. I hope a higher priority will be given to sorting out all their materials.
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Invisible Woman said:
Some attempt was made to sort out some of the documents. AfME reps did sign up here and did enter into some discussion with us.

A leaflet was withdrawn, I think.

Unfortunately, there didn't seem to be much urgency and they didn't really seem to grasp just how problematic the wording of some of their stuff is.

They did say that updating the documents would take time and resource and that's true. However they could have stuck a note at the top of each one clearly stating the document was due to be reviewed and giving a clear statement about the dangers of increased activity. They didn't do that and as far as I know some of their documents remain problematic.

I wonder if some of it is due to trying to keep everyone happy and, unfortunately, the cost of that is borne by patients. It could also be that some of the staff reviewing documents don't fully appreciate the problems, which is a big problem in and of itself.
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Is there scope for patients here helping to revise the problematic documents? At a time when a huge wave of new Long Covid patients might be looking to AfME for guidance, now is not the time to have a load of misleading and dangerous rubbish up on the site about CBT and GET.
 
Following concerns and discussions on the forum, I wrote a couple of letters to AfME back in 2019 here and here. One booklet on return to work was withdrawn after this, and a web page on GET amended with some improvements. AfME were polite in response, but did not express any wish to make use of S4ME people to help with rewriting documents. I think we also discussed their pacing booklet. They have their own advisors and patient group to give feedback and trustees who presumably have oversight, and as far as I know documents are written and amended in house.
 
I think we just have to accept that AfME has always held views and values which differ from ours. Their predecessor organisation used to write nonsense in 1988 or whenever it was, and nothing has changed Presumably there "members" expect no more.
 
chrisb said:
I think we just have to accept that AfME has always held views and values which differ from ours. Their predecessor organisation used to write nonsense in 1988 or whenever it was, and nothing has changed Presumably there "members" expect no more.
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I agree we have to accept that they won't just bend to our will, as they are a separate organisation and have their own people and policies. However, they have changed both personnel and views significantly over the last few years. I think it's still worth keeping communication lines open and expressing well reasoned views to them if we disagree on specific actions or products.
 
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