United Kingdom: ME Association news

Sean · Jul 15, 2022

From the ME Association report of the meeting:

However, there were some differences of opinion, in particular the use of the term biopsychosocial. The RCGP explained that this is now widely used in primary care in relation to almost all illnesses they treat because GPs take a holistic view and often have to deal with social, psychological and medical consequences.
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Invoking the biopsychosocial principle or model does not automatically validate any specific diagnostic, causal, or therapeutic claim made in its name. Each claim (hypothesis) still needs to be empirically validated in its own right.

What is being disputed is the undue prominence given to (putative) psycho-social factors, despite the clear lack of methodologically robust empirical clarification and validation of their claimed role in ME.

That has always been the problem, and still is.

The RCGP can no longer sweep that problem under the carpet by chanting 'biopsychosocial'.

The RCGP accepted that ME/CFS is a medical condition.
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Might be worth getting them to clarify what they mean by 'medical'.

Yeah, I am suspicious they are just mouthing the right words.

Amw66 · Jul 15, 2022

Sean said: ↑

From the ME Association report of the meeting:

Invoking the biopsychosocial principle or model does not automatically validate any specific diagnostic, causal, or therapeutic claim made in its name. Each claim (hypothesis) still needs to be empirically validated in its own right.

What is being disputed is the undue prominence given to (putative) psycho-social factors, despite the clear lack of methodologically robust empirical clarification and validation of their claimed role in ME.

That has always been the problem, and still is.

The RCGP can no longer sweep that problem under the carpet by chanting 'biopsychosocial'.

Might be worth getting them to clarify what they mean by 'medical'.

Yeah, I am suspicious they are just mouthing the right words.
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The RCGP accepted that ME/CFS is a medical condition.

That's the bit that stood out for me.
Mental illnesses are medical conditions .
Words matter . Too often the MEA don't seem to get this.

Dolphin · Jul 15, 2022

Good to see this point was raised and a possible solution that I had mentioned in the past:

On the subject of care for people with severe and very severe ME/CFS, FME pointed out that for many people in this situation obtaining a home visit was often impossible. 

We questioned whether this situation could be improved by the NHS providing financial incentives to carry out home visits. RCGP explained that the problem was not really financial but far more related to the crisis in the workplace in primary care, shortage of GPs, and pressures on GP time.
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I wonder might it work in other health systems? Or indeed perhaps it might still be a possibility in the NHS in some form. At least after the Covid pandemic, telephone appointments seem more available.

Andy · Jul 15, 2022

Amw66 said: ↑

Too often the MEA don't seem to get this.
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To be fair, the MEA are only reporting on the meeting, which was Forward-ME meeting with The RCGP.

Dolphin said: ↑

At least after the Covid pandemic, telephone appointments seem more available.
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At my local GP surgery, they are making far greater use of telephone appointments than they ever have - as far as I can see the default is now assumed to be a telephone appointment. Which is mostly a positive step forward but obviously the most severely affected would be unable to cope with even a telephone appointment, and if a GP can't actually see how badly someone is suffering then they are going to have a challenging time accepting the word of the patient or their carer when there is little understanding of how badly very severe ME can affect someone.

Dolphin · Jul 15, 2022

. We discussed a number of initiatives where we would like to work with
the RCGP on, including the preparation of a new RCGP learning module on ME/CFS and sending out a paper version of the guideline covering its key recommendations to all GP surgeries in the UK (which the ME
Association will complete this summer).
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Does anyone which document this is?

ETA: It might be this: https://meassociation.org.uk/wp-con...linical-Guideline-for-MECFS-December-2021.pdf

Trish · Jul 15, 2022

I took it to mean it hadn't been completed yet.

NelliePledge · Jul 15, 2022

I think it’s the sending to surgeries that hasn’t been completed

Dolphin · Jul 16, 2022

Dolphin said: ↑

Does anyone which document this is?

ETA: It might be this: https://meassociation.org.uk/wp-con...linical-Guideline-for-MECFS-December-2021.pdf
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Dr Charles Shepherd on the ME Association Facebook page:

We are going to send out paper copies of three MEA educational booklets to all GP surgeries in the UK:

MEA GUIDE TO EARLY AND ACCURATE DIAGNOSIS
This is our new and fully updated comprehensive guide to how doctors should be making an early and accurate diagnosis of ME/CFS
Free website download:
https://meassociation.org.uk/2022/0...rtance-of-early-accurate-diagnosis-in-me-cfs/

MEA GUIDE TO LONG COVID AND ME/CFS
This is our new guide to the clinical and pathological overlaps between ME/CFS and Long Covid
This guide also explains how we can help people with Long Covid who have ME/CFS like symptoms - debilitating fatigue and post exertional malaise, cognitive dysfunction, orthostatic intolerance, PoTS etc
Free website download:
https://meassociation.org.uk/2022/05/new-free-booklet-long-covid-and-me-cfs-are-they-the-same/

MEA GUIDE TO THE NEW NICE GUIDELINE ON ME/CFS
This is our summary of all the key recommendations relating to Diagnosis, Management, Children with ME/CFS and Severe ME/CFS that are in the new NICE guideline on ME/CFS:
Free website download:
https://meassociation.org.uk/wp-con...linical-Guideline-for-MECFS-December-2021.pdf

And offer to send a copy of the 2022 MEA purple book on request:
MEA PURPLE BOOK
https://meassociation.org.uk/2022/0...de-the-purple-book-is-now-available-to-order/
The 2022 edition has now been published - covering Research, Diagnosis and Management in considerable detail
We still have funds in the MEA education budget to send out free copies to health professionals throughout the UK

There is clearly a lot of planning involved, specially trying to make sure that our database of GP surgeries is as up to date as possible - so we don’t yet have a firm starting date

This is also going to be quite a costly item from our education and training budget but we believe that it needs to be done
Charles

Charles B. · Jul 16, 2022

Stating that ME is a medical condition is like saying “ME is real.” Anyone trumpeting those lines is clearly saying it’s psychogenic in a way intended to attract as little protest as possible.

This seems so telegraphed, especially since there apparently were questions about RC opposition to the NICE guidelines.

John Mac · Jul 21, 2022

MEA writes to Torbay and South Devon ME/CFS service about their ‘Fact Sheet’ on ME/CFS
July 20, 2022

Dr Charles Shepherd has written to another ME/CFS service to point out that their public information is at variance with the 2021 NICE Guideline. The letter is shown in full below.

Dear Torbay and South Devon ME/CFS Service

Re: https://www.torbayandsouthdevon.nhs.uk/services/me-cfs-service/

It is now 9 months since publication of the new NICE guideline on ME/CFS.

The ME Association, with help from our members, has been monitoring how the existing ME/CFS specialist referral services throughout the UK are implementing the recommendations in the new NICE guideline on both diagnosis and management of ME/CFS.

Unfortunately, when it comes to website information, we are regularly dealing with ME/CFS referral services where their information is now out of date and not consistent with what the new NICE guideline is trying to achieve in relation to early and accurate diagnosis of people with ME/CFS along with a high standard of multidisciplinary management which acknowledges that ME/CFS is a complex multisystem disease.

Having reviewed some of the information on the Torbay and South Devon NHS Trust website for both clinicians and patients there are several instances where this is not consistent with the new NICE guideline recommendations.
In particular, the ‘Fact sheet' for clinicians …..is using the Fukuda diagnostic criteria, which is far more appropriate to selecting homogenous groups of people for research purposes than for clinical use.

The Fukuda criteria involves a different set of symptoms, exclusion criteria and investigations to the recommendations in the new NICE guideline – as well as having a different (ie at least 6 months of symptoms) timeline for confirming a diagnosis of ME/CFS.

So it appears that people in Devon have to have Fukuda defined symptoms for at least 6 months before a GP referral can be made for diagnostic confirmation and specialist assessment – instead of 3 months from onset of symptoms as is now recommended by NICE.

The clinician information also contains statements on deconditioning (‘Musculoskeletal problems are a result of deconditioning causing weakness, reduced stamina and pain) and the use of CBT (to address ‘unhelpful thoughts and behaviours’ and ‘habitual unhelpful behaviour patterns') which are inaccurate, unacceptable to the ME/CFS patient community, and are not consistent with the new NICE guideline.

Having reviewed all the evidence, the NICE guideline committee concluded that it is no longer appropriate to recommend that ME/CFS should be treated with CBT and graded exercise treatment (GET) on the flawed scientific basis that symptoms are perpetuated by deconditioning and unhelpful illness beliefs and behaviours.

This ‘fact sheet' does therefore need to be withdrawn as a matter of some urgency and replaced with information that is up to date and consistent with the new NICE guideline on ME/CFS.

I have not had time to read all the information literature on the website. However, there is one serious error in the patient information leaflet where it still refers to the use of GET as a treatment for ME/CFS.

Having reviewed all the clinical trial evidence, the NICE guideline committee also concluded that there was no significant evidence of benefit from GET and significant evidence of harm.

The new guideline therefore recommends that GET should not be offered as a treatment for ME/CFS.

One final point – as with many long term conditions, some people with ME/CFS will develop depression or anxiety. But these should not be listed as symptoms of ME/CFS.

We would therefore be grateful if you could give this matter your urgent attention and let us know what action is being taken.
If the MEA can be of any assistance in producing patient friendly information based on the new NICE guideline please let me know.

Kind regards
Dr Charles Shepherd Hon Medical Adviser, MEA

Copy to:
Dr Nina Muirhead – Co-Chair, DHSC Group on ME/CFS Medical Education and Training
Carol Monaghan MP – Chair, APPG on ME
Baroness Ilora Finlay – Co-Chair NICE guideline committee on ME/CFS
Anna Gregorowski – BACME
Dr David Strain – University of Exeter
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https://meassociation.org.uk/2022/0...cfs-service-about-their-fact-sheet-on-me-cfs/

Hutan · Jul 21, 2022

Kind regards
Dr Charles ShepherdHon Medical Adviser, MEA
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Super

Andy · Jul 27, 2022

Update from the MEA on their communications with various parts of the NHS about the new guideline.

"This is a brief update on what has happened to far

East Kent NHS Trust: Information leaflet on physiotherapy for ME/CFS withdrawn within hours
https://meassociation.org.uk/.../me-association-writes.../

Norfolk and Norwich NHS Trust - guidance on the management of children and young people with ME/CFS withdrawn
https://meassociation.org.uk/.../norfolk-hospitals-still.../

GP Notes - learning module withdrawn and replaced with two new modules based on the new NICE guideline with help from the MEA
https://meassociation.org.uk/.../gp-notebook-updates-its.../

North Cumbria - no response so far
https://meassociation.org.uk/.../mea-requests-meeting.../

South Coast Fatigue - no response so far
https://meassociation.org.uk/.../mea-writes-to-the-south.../

Torbay and South Devon ME/CFS Service - no response so far
https://meassociation.org.uk/.../mea-writes-to-torbay.../"

https://www.facebook.com/meassociat...f7EY9KZvvSAvsDWDK2i7AeWRQCuQWPdd7PhVwuAxVeQal

Andy · Aug 11, 2022

The MEA have published the report of the Karl Morten organised conference held in July. See Dr Karl Morten - UK researcher based at Oxford University for link.

Andy · Oct 13, 2022

Video:
Juan Corlett, Engagement Lead for Community Support and Integrated Care for the ME Association would like to introduce himself to the ME/CFS community.
Juan says: "I'm extremely proud to have joined this fantastic UK charity for a fantastic cause and something I feel extremely passionate about and something I'm determined to commit to.
I want to help the team make a difference as we represent a large community of people who need us to do things well and I can't wait to get stuck in."
Code:
https://www.facebook.com/meassociation/videos/647995480234614/
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Trish · Oct 13, 2022

Article about Juan Corlett:

Service Development Pioneer Hired by the ME Association!
Over the last 18 months, the momentum generated by ME Support (IOM) is undeniable and offers encouragement for other support groups. The ME Association’s Trustees were so impressed by the work of Juan Corlett, the Isle of Man charity’s Chairman, that they have recruited him.
.../
More at link:
https://meassociation.org.uk/2022/1...fLmdb_Tn1wF0bRlhmvC1cRT9lZNXyqF-Rt6N41NgOgoWs

InitialConditions · Oct 17, 2022

Trish said: ↑

Article about Juan Corlett:

Service Development Pioneer Hired by the ME Association!
Over the last 18 months, the momentum generated by ME Support (IOM) is undeniable and offers encouragement for other support groups. The ME Association’s Trustees were so impressed by the work of Juan Corlett, the Isle of Man charity’s Chairman, that they have recruited him.
.../
More at link:
https://meassociation.org.uk/2022/1...fLmdb_Tn1wF0bRlhmvC1cRT9lZNXyqF-Rt6N41NgOgoWs
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I don't know much about the IOM service, or Juan, but this is the type of work that clearly needs someone with a bit of know-how.

Dolphin · Oct 17, 2022

As far as I know, the IoM service has minimal involvement from doctors. It is based around other health professionals. In my opinion, not a model to aspire to.

BrightCandle · Oct 28, 2022

Moved post

Update from MEAssociation, mentions DHSC is still progressing ME/CFS rollout plan.

https://twitter.com/user/status/1585967683886989312

RedFox · Oct 28, 2022

Transcribed for readability:

ME Association said:

Where are we now? -- An update on some of the latest developments at the ME Association (UK)

On 1st September, we launched a new in-house project to focus on work with the NHS to ensure that reliable specialist services are set up for people with ME/CFS throughout the UK that actually match the exacting standards laid out in the latest NICE guidance on the illness.

This work is being led by Juan Coreltt, who for two years let a successful campaign on Isle of Man that resulted in the creation of a new ME/CFS and Long Covid clinic on the island.

We have committed an additional £175,000 over the next two years to supporting the work of the UK ME/CFS biobank run by the Cure-ME team at the London School of Hygiene and Tropical Medicine -- a project where we have been the main funder since its launch some years ago.

We have promised £30,000 to set up a two-year pilot study due to start next year into the healthcare outcomes for mothers and babies during and after pregnancy, and on the attitudes and experience of their healthcare providers. The study will scope what evidence is required for a possible much larger study further down the line.

In this pilot, our research analyst Dr. Katrina Pears will be collaborating with a team from the Population Health Sciences Institute at Newcastle University -- Professors Mark Pearce and Dr Emma Slack (co-lead investigators), with Professors Judith Rankin and Julia Newton.

A project at Liverpool University exploring whether heart-rate monitoring helps people with ME pace their activites better has also won our support. This will be led by Professor Nicola Clague-Baker, one of the founders of Physios for ME.

We continue to be active supporters of the £3.2m Decode ME Study, the world's largest deep dive to find gene sequences unique to ME. Thousands of volunteers are taking part, using a simple spit test. To volunteer, visit https://www.decodeme.org.uk/

We are also keeping a close watch on progress of the 'Delivery Play' for ME/CFS launched on ME Awareness Day this year by Sajid Javid when he was Secretary of State for Health and Social Care.

We have three ME Associations people on Delivery Plan working groups -- our medical adviser Dr Charles Shepherd, trustee Nicola Anson and communications manager Russell Fleming. They tell us that the initiative is still alive and kicking, despite Mr Javid's departure from Goverment.

TB 28/10/22
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Dolphin · Nov 5, 2022

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From Facebook:

X

I work in a GP surgery and I was ecstatic when I came in today to find this pile of info on the communal lunch table

Comments
ME Association
Was this in the GP staff room? If so, our mail out of information on ME/CFS to ALL GP surgeries throughout the UK must have started. This is a new MEA medical education initiative but it does come at a considerable expense. I think it’s going to us around £25,000 - no government funding! Dr CS MEA

Y
ME Association that's dedication to our cause, thank you so much for your efforts. I know earlier I had a bit of a rant over what is being offered in my experience, but I am incredibly grateful for all the efforts the association and Dr C.S is making on our behalf.

X
ME Association yes in our staff room. Didn't manage to catch any of them to say how exciting this is, that a little known chronic illness has some info being spread

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