Open UK: Action for ME's list of current research projects recruiting.

Andy

Andy

Retired committee member
People with M.E. often ask us how they can get involved with research. If you haven't registered your interest to potentially take part in DecodeME, the world's largest M.E. DNA study, please do so: it's open to over-18s in the UK with an M.E. diagnosis, and you can take part from home.

Below we offer details of other research projects seeking participants. Each one gives contact information for the person you will need to speak to for more information.

Please note that by listing research projects here Action for M.E. is not endorsing them. The studies on this page have all obtained ethics approval (if such approval is required) and all are being undertaken at a medical, research or academic institution. For more information about what getting involved in research and/or clinical trials might mean, please visit NHS Choices.
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https://www.actionforme.org.uk/rese...h-we-fund/research-you-can-get-involved-with/
 
All five of them psychological in nature.

Experiences of pupils with CFS.
Attitudes towards people with CFS/ME.
Transforming healthcare of ME/CFS through Arts.
Sensory experiences of ME/CFS.
Young peoples experience of pain.

If anybody still had any doubts about Action for ME being firmly in the BPS camp this should remove those doubts.
 
John Mac said:
All five of them psychological in nature.

Experiences of pupils with CFS.
Attitudes towards people with CFS/ME.
Transforming healthcare of ME/CFS through Arts.
Sensory experiences of ME/CFS.
Young peoples experience of pain.
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I had that sinking feeling too. After reading quickly through them I summed them up in my head as 'How are you feeling today, dear' trials.

John Mac said:
If anybody still had any doubts about Action for ME being firmly in the BPS camp this should remove those doubts.
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This part I disagree with. They do say explicitly that they are linked for information, not as endorsements. They didn't fund any of them, I think.
 
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John Mac said:
If anybody still had any doubts about Action for ME being firmly in the BPS camp this should remove those doubts.
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As I quoted in my first post (my bolding)
Please note that by listing research projects here Action for M.E. is not endorsing them. The studies on this page have all obtained ethics approval (if such approval is required) and all are being undertaken at a medical, research or academic institution. For more information about what getting involved in research and/or clinical trials might mean, please visit NHS Choices.
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DecodeME, which they mention first of all, would not be happening without AfME's involvement. If they were "firmly in the BPS camp" then that would not be the case.
 
It is irrelevant whether they are endorsing them or not, they are publicising them to their members and the public.
To mention five pyschological studies and not mention a single biological study such as the large number we mentioned yesterday on this forum seems to me to be a bias towards psychological studies.
 
John Mac said:
It is irrelevant whether they are endorsing them or not, they are publicising them to their members and the public.
To mention five pyschological studies and not mention a single biological study such as the large number we mentioned yesterday on this forum seems to me to be a bias towards psychological studies.
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What UK based biological ME studies are recruiting at the moment?
 
Just to say I don’t think Action for ME are firmly in the BPS camp. They just wrote me an amazing piece of advocacy (letter) which as far as I can see, no one in the BPS camp would want to do.

also, I don’t think the sensory project is bad. Yes it’s done by the psychological department but it’s measuring EEG etc at Oxford Brookes, I think we might have even been discussing this project before on S4ME.

the psychological projects also don’t all seem to be normal psychology we associate with ME? It’s about how others around us react to our diagnosis, healthcare providers attitude towards us. And it mentions involving those with severe ME as they are usually excluded.
 
lunarainbows said:
Just to say I don’t think Action for ME are firmly in the BPS camp. They just wrote me an amazing piece of advocacy (letter) which as far as I can see, no one in the BPS camp would want to do.

also, I don’t think the sensory project is bad. Yes it’s done by the psychological department but it’s measuring EEG etc at Oxford Brookes, I think we might have even been discussing this project before on S4ME.

the psychological projects also don’t all seem to be normal psychology we associate with ME? It’s about how others around us react to our diagnosis, healthcare providers attitude towards us. And it mentions involving those with severe ME as they are usually excluded.
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From 2010 to 2015 Dr Alistair Miller was Action for ME's "Medical adviser".
Esther Crawley was their sister organisation AYME's "Medical Adviser".
Would you say they aren't firmly in the BPS camp?
 
John Mac said:
From 2010 to 2015 Dr Alistair Miller was Action for ME's "Medical adviser".
Esther Crawley was their sister organisation AYME's "Medical Adviser".
Would you say they aren't firmly in the BPS camp?
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Yes I know there were huge problems with them then. I wasn’t involved in ME stuff until recently but have seen the threads here. But that doesn’t mean they can’t have changed.
 
lunarainbows said:
Yes I know there were huge problems with them then. I wasn’t involved in ME stuff until recently but have seen the threads here. But that doesn’t mean they can’t have changed.
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It's still got the same person as it's head who was very happy taking medical advice from BPSer's.
 
I do think AfME has changed a lot, although I'm also sure that some on their Board and in their staff support BPS ideas to a greater or lesser degree. Even now, their messages and materials aren't always entirely helpful.

Andy said:
DecodeME, which they mention first of all, would not be happening without AfME's involvement. If they were "firmly in the BPS camp" then that would not be the case.
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I don't think support for DecodeME, even the active, constructive support that AfME has provided, should be taken as a guarantee of anti-BPS credentials. I have no doubt that many BPS supporters would be fine with a small subset of people diagnosed with ME/CFS being found to have a genetic basis for their illness, leaving the others more definitively for the MUS bucket. And the finding of genes that more broadly increase the risk of ME/CFS could, probably quite easily, be accommodated within the BPS paradigm. As evidence for BPS support for genetic studies: Esther Crawley was a lead proponent on MEGA, an earlier proposed GWAS.

Trish said:
After reading quickly through them I summed them up in my head as 'How are you feeling today, dear' trials.
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Yes, and some at least could be useful, in terms of providing data to increase understanding of what having ME/CFS is like, and to justify better care.

https://www.actionforme.org.uk/research-and-campaigns/research-we-fund/our-projects-and-phds/
To be fair, the projects that AfME is actually funding are much more focused on biology - although it would be good to see a lot more from the UK's best funded ME/CFS charity. Perhaps AfME could take on the challenge of developing its networks so future updates to its 'recruiting' page include a much larger percentage of clearly biologically based studies?
 
lunarainbows said:
Who’s that? Sonya Chowdhury? https://www.actionforme.org.uk/get-information/about-us/our-staff-team/

I don’t have enough knowledge to comment on it, but if she did do that, then there’s nothing to say people cant change as well. Isn’t she also now involved with DecodeME?
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She took over after Alistair Millar,s appointment in 2010 and the Pace trial had been done and results out in 2011, and after she took over her son got ME so think she has understanding.
 
Sly Saint said:
see https://www.s4me.info/threads/action-for-me-has-joined-s4me.2944/

something to also think about is AfME is closely aligned to BACME.
https://www.actionforme.org.uk/support-others/for-healthcare-professionals/treatment-and-management/
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Further down the page is this comment on the AfME website:

"There is much debate and discussion about CBT and GET – and the published evidence for them – about whether or not they work, and whether they might cause harm. In October 2019, we responded to NICE’s call for evidence as part of its guideline review, using data from our Big Survey of more than 4,000 people with M.E. We made it clear that we do not support the current guideline’s view that CBT and GET “are the interventions for which there is the clearest research evidence of benefit” for people with mild to moderate M.E. This is because of the legitimate questions raised about their safety and effectiveness.

Both the NICE guideline for M.E. and SGSP stress that the following should not be offered to people with M.E.:

  • advice to undertake unsupervised or unstructured vigorous exercise (such as “going to the gym” or “exercising more”) because this may worsen symptoms
  • specialist management programmes delivered by practitioners with no experience in the condition
  • an imposed rigid schedule of activity and rest."

MEA also still have a mention on their site re the BACME guide from 2015

https://meassociation.org.uk/2015/0...and-management-guide-for-cfsme-4-august-2015/
 
I do undersatnd that AfME have done dreadful things for people with ME in the past.

Having been to 3 AGMs and asked awkward questions about EC in particular, and chatted with several Trustees and staff, I do feel that their approach has changed.

Some of their publications/website info is unimpressive and some of their initiatives are not what many of us on S4ME would choose.

However as @Andy says, Sonya was the driving force behind getting Decode ME funded. It is the same case for the James Lind PSP.

My approach is to work co-operatively, where we can, ie on projects where we have the same goal. The psychs will be thrilled whenever they see PwME disagreeing amongst themselves, whether it's about the name or other differing views.

It will be really disappointing if people with ME are put off good projects solely because AfME are involved.
 
AfNE is still not a patient led organisation and has been structured so that it won't be possible for patients to set the priorities or really be in control.

It is not a disabled persons organisation (DPO) but a charity that does as it decides to do based largely on views of non-patients.

A one-line disclaimer in front of a list of BPS research is entirely worthless, especially when part of the path to the link is "research-we-fund". @Trish AfME are anything but open about what they fund.

AfME have way too many paid and often bid for projects that will cover their staff costs by directly funding staff time - and the staff are not research scientists so it means money down the drain.

On the other end of the spectrum are charities like Invest in ME Research without paid staff, and with large patient funding for actual biomedical research. Millions raised for it in fact.

Sonya might have had a lot of credit for DecodeME but that speaks much to the power and size of Action for ME. Sonya's PACE trial apology was deleted only a few months after being made.

Heterogeneity in Chronic Fatigue Syndrome –
empirically defined subgroups from the PACE
trial (2020) - last author Peter White s states:
"inclusion of Action for ME representatives on the trial management committee (with the resulting addition of the adaptive pacing therapy arm) may have aided recruitment of a representative patient cohort. "​

Action for ME are still consulting with Esther Crawley, a de facto "rubber stamping" or perhaps I should say "box ticking" of "patient involvement" on behalf of a researcher who continues actively promoting utter nonsense and misrepresenting ME. https://bmchealthservres.biomedcentral.com/article/10.1186/s12913-017-2337-6

O'Dowd et al 2020 "The study team would like to acknowledge the advice and support of Action for ME..." - First author being PACE trial center manager Hazel O'Dowd, Esther Crawley is a co-author, and the early intervention being a BPS one.
"Early intervention
EI was adapted from treatment for CFS/ME delivered by the Bristol CFS/ME service, which follows NICE guidelines for CFS/ME [4]. EI is based on a cognitive behavioural model of fatigue, focusing on strategies to improve sleep (sleep hygiene) and to balance activity (using activity diaries). The intervention included making a sleep and rest routine, monitoring the type and amount of activity undertaken every day and helping to develop consistent daily activity levels. CBT was used to explore barriers to getting better including fearful cognitions, avoidance of perceived risky situations, all-or-nothing behaviour, inappropriate beliefs about rest and sleep and focusing only on symptoms as opposed to experiencing them as normal bodily sensations. Where possible, solutions were discussed with participants. EI treatment sessions were audio-recorded and reviewed by the PI to ensure adherence to the treatment manual."
​
Beyond bones: The relevance of variants of connective tissue (hypermobility) to fibromyalgia, ME/CFS and controversies surrounding diagnostic classification: an observational study (2020) - Jessica Eccles, arts graduate, Bath. Last author Hugo D Critchley, chair in psychiatry.
"by a studentship awarded by Action for ME and match-funded by Brighton and Sussex Medical School"
​
Non-Crawley research they funded:
HYPERMOBILITY AND AUTONOMIC DYSFUNCTION: INSIGHTS FROM BENCH TO BEDSIDE (2019) with lead researcher Jessica Eccles with a BA in History and Philosophy of Science, in Sussex and Brighton (Crawley is medical advisor for the Kent and Sussex "ME" charity), which concluded...
A data- driven theoretical model linking joint hypermobility to psychiatric disorder is proposed, characterised by aberrant autonomic control and central representation, grounded in current theoretical models that seek to frame emotion as interoceptive inference, using leading-edge predictive coding approaches.
​
Healthcare Provision for Chronic Fatigue Syndrome (2018) - actually a book chapter in Tired All The Time from another Bath based researcher, Jessica Eccles.
"Finally, the chapter presents outcomes of three behavioural therapies used to manage symptoms of the illness. These include multi-convergent therapy developed by a physiotherapist and the counselling services and rehabilitation courses run by Action for ME."​

Giving biopsychosocial / mind-body researchers funding to investigate pain, fatigue and EDS using questionnaires is throwing the money away. ME is a neurological disease with immune system dysfunction - we need to know how the disease works and how to treat it.
We need biomedical research by scientists - not observations, questionnaires and biopsychosocial theories.
 
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