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

Apparently Dr David Strain was appointed to the position in June:

https://www.actionforme.org.uk/get-information/about-us/president-patrons-and-advisors/

 

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.

 

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.

 

I definitely agree with this.

 

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.

 

"Principal Medical Adviser from 2010-2015 for Action for ME"
https://me-pedia.org/wiki/Alastair_Miller
(Sonya has been CEO since 2012)

 

copied post

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.

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.

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?

 

Does anyone know why on earth this is?

 

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/

 

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.

 

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.'

 

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.

 

I absolutely, agree and it is very much that there have been mixed messages put out there over recent times.........

 

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.

 

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.