United Kingdom: Action for ME (AfME) news

Trish said:
Survey: the impact of Covid-19 on people with M.E./CFS
We’ve teamed up with #MEAction UK to launch a survey looking into the effect that Covid-19 has on people with M.E.

The survey aims to explore if M.E. symptoms are affected by Covid-19, how long any change in symptoms last and whether cognitive and/or physical functioning changes. The survey also ask about any new symptoms and how long these have lasted. Finally, it looks at the impact Covid-19 has had and whether it has led to increased use of healthcare services.

The survey will take approximately five minutes and is for people with M.E. who have had Covid-19 symptoms and/or been diagnosed with Covid. Respondents do not have to be a UK resident to take part. All responses will be anonymous.
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"Read the first findings from the survey #MEAction UK and #MEAction Scotland are conducting with Action for ME to gather evidence of the impact of Covid-19 on people with ME.

The aim of the survey is to provide data that can be used, along with personal stories, to help our campaign to make the government aware of the impact that Covid-19 is having on people with ME and the need to provide effective support to those affected.

The initial findings, based on the first 220 responses, show clearly that Covid-19 had a significant impact on respondents. Over three quarters of the respondents said that Covid-19 made their ME symptoms worse. This impact appears to be long lasting, with over two thirds of respondents reporting that the worsening in symptoms has lasted more than 6 months and have still not resolved. Not only have existing symptoms worsened, but over 70% of respondents reported that they had developed new symptoms, including shortness of breath, chest pain and dizziness."

https://www.meaction.net/2021/04/29/covid-19-has-worsened-our-me-report-survey-respondents/



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"Join our ActforME Network and help drive change
People with M.E., carers and supporters are working together as part of the Act4ME Network to contribute to a real and lasting change for those living with M.E./CFS throughout the UK.

Our vision is a series of coordinated activities to raise awareness of M.E./CFS and put pressure on decision makers to prioritise the condition for increased funding and better awareness and understanding. These might include:
  • tweeting or writing to your MP, MSP or AM to highlight a key issue
  • asking a local decision-maker to add their support to a specific campaign
  • sharing your insight and experience to inform a debate or consultation."
https://www.actionforme.org.uk/rese...mpaigning-for-change/join-our-act4me-network/
 
It's also the wrong time to do this. If it had been 2011, maybe. But how much of AfME today is the same as AfME then?

A cynical person might wonder if this is designed to eat up their resources at a crucial time (e.g., the release of the new NICE GL draft), but I don't think anyone in the position to do that is that clever.

More likely, this is a misguided ally who should've discussed this with others before acting. They probably thought they were being really clever at the time, but that's the ironic thing, isn't it?
 
Andy said:
What a waste of everybody's energy, time and effort,
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I agree. The only positive I can find is the tone of article regarding PACE.

This is one of the first times I can remember the mainstream media being so critical of PACE. Generally they use words like "controversial" or "contested" rather than simply stating that it has been 'widely discredited'.
 
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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.

This post has been copied and some of the discussion moved to this new thread:
UK Action for ME - policies, actions and publications - discussion thread
 
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It is strange. It is hard to see the complaint as more than a diversionary tactic. What other tactical or strategic purpose could it serve? The charity commission is unlikely to take the matter seriously. The most obvious possible use is for someone, when the NICE guidelines are issued, to say that PACE was endorsed by a patient organisation, as evidenced by the recent complaint. It will be interesting to see who dares.
 
Art Vandelay said:
View attachment 14493

AfME's response can be found here.


(I couldn't find a version of the article online that I could link to, so I hope posting a screenshot of it is ok. Please let me know if it should be removed/edited.)
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This is weird. Also misleading, NICE did not reverse their endorsement, the committee simply evaluated it, which did not happen in 2007 when it was rubberstamped as bestest ever. NICE the organization is very much still infatuated with PACE, although it does not "endorse" studies in a formal sense but it does that work through committees.

Either this is a very clever attempt to push the framing of PACE being discredited and allowing for the blame to be shifted to the right place? Way to place the "worst medical of the last century" in this, frankly no matter how odd this is interesting.
 
Thinking this through, the article looks very strange. It appears that it must be the person who filed the complaint who briefed the Telegraph. AfME apparently do not yet have full particulars of the alleged breach of duty. The only information given is that AfMe allegedly acted contrary to public interest in supporting the trial. well good luck with that. If there are other claims why were they not specified?

This looks vexatious.
 
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