United Kingdom: Action for ME (AfME) news

If AfME expect patients to get behind the "holistic Healthcare Services" they're touting in Shaping Our Future Together, then the ME Trust legacy services will need thorough review.

From that issue of InterAction magazine:
"Action for M.E. has now completed its merger with The ME Trust, offering Healthcare Services [including]... Physiotherapy. Our physiotherapist’s expertise and advice helps to improve quality of life, working gently, step by step towards increasing levels of activity and function... Coming up with a plan gives the patient a sense of control and hope" [my bolding].

The online info at https://www.actionforme.org.uk/get-support-now/our-healthcare-services/physiotherapy/ has all that plus the patient-blaming phrase "boom and bust", and some awful stuff about "addressing the damage that may have occurred due to spending a long time in bed or indoors".

AfME will have trouble promoting the NICE guideline nationally if they aren't implementing it in their own services. AfME's approach of "working gently, step by step, towards increasing levels of activity" does not seem to me to be in line with the guideline requirement that in "a personalised physical activity or exercise programme, agree a programme with them that involves...making flexible adjustments to their physical activity (up or down as needed)".

I'm honestly shocked after all the solid work AfME has done recently to see these old canards about planning one's way out of illness by "working gently". No matter how "gently" it is done, the premise that it is possible to exert oneself out of this illness is false and can be harmful. "Step by step" implies a single direction of travel, and that is where the harm is done.

Have @PhysiosforME been consulted about AfME's approach?

 

Hopefully, but yes, I feel comforted that if so we have someone with the right quals given the right position to put together a 'this is how it could look' so that we don't get games + politics (with small 'p') being played or it being handed based on the person vs the science. Currently some of the ideologies are being used to turn what are 'findings' into 'narratives' rather than providing tables of results that can be combined and built on with an open mind (HPA axis stuff being misattributed as being anxiety is a biggie). Co-ordination of results and approaches to areas is vital to step things away from this.

A sensible strategy gives us the right to say 'why did you choose the opposite' with something to show that is viable, should any funding become available and get sent to the usual strange places. It hopefully also makes for something worth being part of. I'd like the right people attracted in and feeling protected from the hostile environment that we hear rumours has been created by the same individuals who use pretend accusations to distract people from calling that out. So it is necessary on that front too.

A sales pitch is needed why doing the work properly rather than iterating to infinity under the promise of short-cutting to trials so you can claim you are 'doing something' is needed. We are battling against an area allowed to use cheap methods to produce lowest-common denominator results with minimal effectiveness, even when they tinker with the measures all the way through. Who also seem to feel entitled to the same funding they've got used to receiving for old rope, with no doubt claims of terrible consequences if they don't continue to receive it even if what they offer has no benefit for end-user or taxpayer.

Someone advocating for the straightest-line programme that makes sense given the ME clusters and variations (due to lack of understanding/research and the nature of illness) on this would be important in showing up certain bids vs sound science creating building blocks? and what the full pros and cons are of each (ie in switching from sustaining one without caveat to building capability in another)

 

I think the reality is that where the (English) NHS leads the NI system is likely to try to follow. Basically if you ask a question then the standard reply is NICE Guidelines - AKA English NHS approach. It's difficult to get beyond that parrot following of the position in England, partly since it would require independent policy development and partly because the funding from Westminster directs following the English NHS model.

I'll informed prejudice (on my part) I should add.

 

See UK Parliament: Myalgic Encephalomyelitis / Chronic Fatigue Syndrome Announcements: Statement made on 12 May 2022

 

I've been totally swamped at work so only just catching up with all the messages.

We've not had any contact with A4ME about this.....

 

@PhysiosforME Sorry about the delayed response - I'm only strong enough to post very infrequently.

It's interesting to hear that AfME haven't been in touch with Physios For ME about AfME's physiotherapy offerings.

I wonder how the issue of AfME's physios offering a quasi-GET approach of "working gently, step by step towards increasing levels of activity" can be raised constructively and effectively?

We wouldn't expect a Macmillan Cancer Centre (strapline: "we won’t settle for anything other than the best possible support for people with cancer") to offer outdated and potentially harmful treatment advice. Desperate patients who go to the AfME for physiotherapy - a service which the patient has to pay for - also deserve the best possible advice and support, developed in consultation with the relevant experts.

Besides, AfME is positioning itself as a leading advocate for implementation of the NICE guidelines. AfME's services should be a role model for the NHS, not reproducing the NHS's problems.

 

Action for M.E. & ME Research UK launch pioneering PhD-level research

"Action for M.E. and ME Research UK are delighted to announce the launch of a new ground-breaking PhD-level research project in conjunction with King’s College London.

....

Action for M.E. are delighted to further announce that details of a second PhD will be published imminently."



https://www.actionforme.org.uk/news...arch-uk-launch-pioneering-phd-level-research/

 

"Action for M.E. is delighted to announce a second ground-breaking PhD, this time in conjunction with the University of Oxford.

This comes shortly after announcing our jointly funded collaborative initiative with King’s College London (KCL)

Our second PhD has been part-funded by Action for M.E., with the other 50% raised through crowdfunding, and will be hosted by the University of Oxford. The Principal Investigator is Dr Karl Morten, Director of Graduate Studies, who will be supported by a student to explore the role for the microbiome and leaky gut as a symptom of M.E./CFS and other conditions associated with chronic disease."

https://www.actionforme.org.uk/news/action-for-m.e.-announce-a-second-ground-breaking-phd/

 

close ties with Sussex and Kent ME society.
Harrison is one of their medical advisers (along with Esther Crawley, Alistair Miller, Jessica Eccles, Lesley Findley, Alan Stewart)
https://measussex.org.uk/about-us/medical-advisors/

see also their conference where some of the research projects were discussed
https://www.s4me.info/threads/united-kingdom-sussex-kent-me-cfs-society-news.1906/page-7#post-386256

 

Just Googled "Retrotransposon Insertion Polymorphism" and found this paper*. Interesting to see the link to immune dysregulation (Lupus and Chron's are mentioned).

GWAS, and gene expression, both get a mention* so this could possibly link to the outcome of Chris Ponting's (GWAS) study and Alain Moreau's (gene expression) work.


*https://www.frontiersin.org/article...al,reverse transcription of RNA intermediates.

 

Fairly reassuring, but I'm confused by this bit:

Does this mean the team will be using Fukuda alongside CCC to identify M.E. patients? If so, that's an odd choice in a study that's supposed to be looking at PEM, and seems likely to lead to a lot of overlap between the "M.E." group and the fibromyalgia group.

It would be great if AfME could have a public policy on how studies they fund should identify ME patients, building on the work done by Decode ME on their own questionnaire (IOM/CCC + PEM). In the meantime, perhaps AfME could consider instructing grant recipients not to use Fukuda or Oxford to identify ME patients?

Also that brief description does not acknowledge that the study is only accessible to (very) mildly affected ME patients - hospital-based testing & exercise challenge followed by +24 hrs repeat including exercise challenge - and that this may limit the applicability of the results. Again, I'd love to see AfME give some guidance in this area, not to restrict studies of mildly affected patients, but to require researchers funded by AfME to reflect at the design stage and again at analysis on the severity category of their participants.

 

Consultation on Media Guidelines for M.E.

"This consultation seeks feedback on suggested media advice for journalists reporting on M.E. and developing a helpful handbook of best practices for distribution to media outlets.

The purpose of this consultation is to gather opinions from important stakeholders to ensure that all perspectives of the community are captured.

Currently, the Action ME - Media Guidelines.pdf comprise of 10 easy points to keep in mind whilst writing about M.E.

For example, "tired" is often used in the media, which can undermine the seriousness of the condition and upset those living with M.E., many of whom are unable to care for themselves in the most extreme circumstances.

The consultation is currently accessible to all interested parties and will continue until Monday 12th of September 2022, the document will be officially released with all public responses considered."

https://www.actionforme.org.uk/news/consultation-on-media-guidelines-for-m.e/

 

Can somebody please summarise the following annual meeting video (There are no subtitles)?

https://www.youtube.com/watch?v=g9yabMn-bz0

 

you can access the transcript (three dots next to +save on Youtube).

 

They summarise their AGM in this article, https://www.actionforme.org.uk/news/agm-2022/

 

https://www.actionforme.org.uk/news/​media-guidelines-consultation-thank-you/

"Media Guidelines consultation: thank you

September 15, 2022

Last month, we launched a consultation on our new media guidelines for journalists, and it closed earlier this week.

We received a lot of positive feedback about the consultation, and are grateful to everyone who shared their insight and ideas via email and social media.

The final guidelines will be released at the end of the month when we have finished considering all responses.

Thank you to all who took part."