NHS England Launches New E-learning Module on ME/CFS, 2024

[Andy]

I wonder who dreamt this up?

"Work to develop three E-learning modules has been overseen by Dr David Strain (Medical Adviser to Action for M.E.) and Essi Niitymaki (TEL Education Content Senior Project Manager, NHS England). Also involved were a group of clinicians with an interest in ME/CFS, charity representatives including me, and people with lived experience of the condition."

 

[bobbler]

"Work to develop three E-learning modules has been overseen by Dr David Strain (Medical Adviser to Action for M.E.) and Essi Niitymaki (TEL Education Content Senior Project Manager, NHS England). Also involved were a group of clinicians with an interest in ME/CFS, charity representatives including me, and people with lived experience of the condition."

It might be my memory vs a lot has happenned over the last few years, or just I've missed it but can I ask the question of why David Strain is writing this and suddenly seen as an expert on ME?

From what I thought he suddenly appeared when Covid happened, and hadn't been involved at all with CFS or ME or anything prior to that, yet was one of those in the early days saying that 'Long COvid' was happenning and was interesting

I know that there are overlaps potentially between some of those who have COvid ending up with ME/CFS but I don't know when or how he came into contact with and got experience of ME/CFS? ie I feel like I've just missed that 'joining up' part?

 

[Cinders66]

It might be my memory vs a lot has happenned over the last few years, or just I've missed it but can I ask the question of why David Strain is writing this and suddenly seen as an expert on ME?

From what I thought he suddenly appeared when Covid happened, and hadn't been involved at all with CFS or ME or anything prior to that, yet was one of those in the early days saying that 'Long COvid' was happenning and was interesting

I know that there are overlaps potentially between some of those who have COvid ending up with ME/CFS but I don't know when or how he came into contact with and got experience of ME/CFS? ie I feel like I've just missed that 'joining up' part?

An early DS interview when he became the face of long-covid.

David Strain, who is playing a leading role in the BMA’s COVID response, and who is researching long COVID as part of his job as a senior clinical lecturer at the University of Exeter Medical School, has witnessed this at first hand.

‘Prior to COVID, I was already working on chronic fatigue syndrome, and pre-COVID it was very, very difficult to get anyone to take an interest in either research, or data evaluation or to do studies into chronic fatigue syndrome, in the UK at least. I put grant applications in to do work into the underlying causes of CFS, pre-COVID, and they were commonly side-lined as low priority; now exactly the same grant applications are being funded.

Long COVID – we’ve been here before
https://www.bma.org.uk/news-and-opinion/long-covid-we-ve-been-here-before

However, like you I had never heard of him

 

[Andy]

David Strain was appointed medical advisor to AfME in July 2021, United Kingdom: Action for ME (AfME) news

 

[Maat]

Since when was ME, CFS, CFS/ME and ME/CFS in that order, a 'new' or 'emerging disease' from the 80s? Who would benefit from such a description and why? Is this an attempt to protect, government departments, NHS figures and government advisers from that period? Is this now the official public authority 'line', especially with the repeated references to 'colds' and 'flu'?

B. Is ME/CFS a new disease?
Although ME/CFS is a relatively recent diagnostic term (first used in the 1980s), there have been many reported cases of ME-like disease in history.

• Crimean Fever: Florence Nightingale.
• Epidemic Fatigue Illnesses.
• ‘Chronic fatigue syndrome': Lake Tahoe: ‘Raggedy Ann syndrome'.

C. How does the stigma around ME/CFS affect people?
Anything ‘new’ ‘emerging’ or ‘unproven’ in medicine is often met with scepticism and/or stigmatised as being psychosomatic. Multiple sclerosis (MS), for example, was regarded in this way until diagnostic lumbar puncture tests and MRI scans were able to prove its existence.

ME/CFS is currently still an emerging disease with no proven cause or diagnostic test. As a result it has been subject to the same scepticism and labelled with terms which undermine its impact on people. Including:

• Raggedy Ann syndrome.
• fatigue illness.
• yuppie flu.
• chronic fatigue.

This paper by DENNIS GEFFEN, O.B.E., M.D., D.P.H. Medical Officer of Health, Metropolitan Borough of St. Pancras. was read to the Metropolitan branch of the Society of Medical officers of health in 1957 where the outbreak of what he described as 'acute infective encephalomyelitis' was described. An outbreak of encephalomyelitis in the Royal Free Hospital Group, 1955 - ScienceDirect That potentially has the power to link the 1955 outbreak one of many throughout the world since the 1918-1919 H1N1 flu pandemic and infective encephalitis. That was also the beginnings of the Ministry of Health at the end of the first world war.

Like Valerie Eliot Smith says, over 100 years.

The patient access version of this e-learning module went live on 15 May. 5 days before official publication of the final Report in the Infected Bloods Inquiry. The contents of the final report would have been known to the DHSC, government, civil servants, and NHS heads in advance.

Or is this just ME patient 'noise'.

 

[bobbler]

David Strain was appointed medical advisor to AfME in July 2021, United Kingdom: Action for ME (AfME) news

SO you'd think he'd had a good lot of involvement with ME/CFS for a while before then?

@Cinders66 I'm guessing the research or 'working on' CFS he mentions he was already doing isn't something there are any examples or links provided for? or specifics re: whether he was in a clinic or in what situation ( a lab or something)?

AfME seem a pretty good entity these days so it feels like there is some sort of background I'm missing that led them to this as even if it was based on the covid stuff JUly 2021 would have been early days (particularly given Garner's 180 had been Jan 2021 ish )

 

[bobbler]

David Strain was appointed medical advisor to AfME in July 2021, United Kingdom: Action for ME (AfME) news

I've got the following from the news item on AfME webpage:

Dr Strain brings a wealth of clinical and academic experience to our charity, as Senior Clinical Lecturer at the University of Exeter Medical School and as a consultant to the Devon M.E./CFS specialist service. He leads the British Medical Association’s Covid-19 response team and has repeatedly drawn parallels between Long Covid and M.E./CFS, calling for research to benefit all post-viral illnesses.

So was he the consultant for the Devon ME/CFS specialist service for a long time before this?

I got the impression the feedback wasn't very good in Devon so I ask on the basis of there are merits to him being a 'fresh face' or having tried to change that as much as 'many years' I would guess?

 

[Dolphin]

From: Dr. Marc-Alexander Fluks


Source: British Association of Clinicians in ME/CFS (BACME) Date: May 22, 2024 URL: https://bacme.info

NHS England Launches New E-learning Module on ME/CFS ----------------------------------------------------

As part of the Department of Health and Social Care (DHSC) Delivery Plan on ME/CFS, a new e-learning module has been developed. This has been led by Professor David Strain and Essi Niittymaki, Senior Project Managers, with input from people living with ME/CFS, charity representatives and clinicians working in the field including BACME members.

This module was showcased at BACME conference last week and is one of three continuing professional development (CPD) modules that will make up the full resource. BACME is pleased to announce that this ME/CFS e-learning session is now live. It has been checked and approved by the DHSC, and NHS QA team. NICE has seen and approved the module and are adding it to their resources. Access to the module is universal. The session is aimed at anyone who might have an interest in ME/CFS and provides an overview and general information, as well as reducing the stigma around ME/CFS.

BACME think this module is an important educational resource, and we will update you about the next modules when they become available. In the meantime, please work through the module and give feedback. The links to the session are below: * Full programme page: https://www.e-lfh.org.uk/programmes/mecfs-elearning/ * Direct link: https://learninghub.nhs.uk/catalogue/mecfselearning

Feedback will be welcome and reviewed 3 months post launch.

Lastly, please do signpost to this module through your websites and share widely to ensure as much feedback as possible. Thank you.

We hope you find the e-learning engaging and helpful!

All best wishes Anna Gregorowski, BACME Chair

 

[Lou B Lou]

BACME Chair Anna Gregowowski:

'BACME think this module is an important educational resource'

BACME would think that.

The document is lame, trivialising, and frequently misleading. Very poorly phrased, full of misleading tropes, reads like it's written for 10 year olds rather than Drs/HCPs. The document tells HCPs to refer us to the mythical 'specialist clinics' of course.
Deeply depressing that we've waited decades for such a learning module for the NHS, and what's been produced is pathetic. I don't think that picking out the less terrible parts of this document and being grateful for them is the way to go.



Example -
The section below, listed under 'Causes of ME' implies that all, or large enough, numbers of pwme changed their diet early on after becoming sick, and that change was to high carbohydrate and caffeine drinks. While some pwme may have done that, this document gives the impression that was/is a widespread behavior. I'm sure the writers had no evidence whatsoever for that statement other than anecdotal. But the supposed changes to diet *after* pwme become sick is listed under 'Causes of ME'. It's just not logical.
I must say the only dietary change I had early on after becoming ill, and for the next year and a half, was regularly going hungry and losing weight due to being too sick to physically get to the kitchen, even if there was any food in the kitchen.


Example:
Under 'Chapter 2: Causes of ME/CFS'

'E. Other theories.
There are several other theories around the cause of ME/CFS which are still under investigation.


3. Microbiome.

• • Microbiome are micro-organisms that live on or in our body. People with ME/CFS tend to have a lower variety of micro-organisms, particularly the ‘healthy' bacteria that we need to function normally.

• • Our microorganisms are dependent on a number of things including what we eat and drink.

• • It is not known whether dietary changes early in ME/CFS (eating high carbohydrate foods or drinking caffeine drinks) may be responsible for the changes.'

 

[adambeyoncelowe]

The plan is that there will be three modules, each covering a different severity. I was in the meetings and there was a lot of debate about this, but NHSE felt they couldn't adequately cover all severities and experiences in each of the short modules.

I advised against the long list of potential causes, given that same explanation for only covering one severity at a time. It's just wasted space.

I also pushed back against food improving "exercise tolerance" and said it was a) unevidenced and b) likely to cause problems. But when we first saw it, it was also when we were told the text had been set and couldn't be changed (only typos could be fixed).

Overall, I have mixed feelings about it. If it helps, it'll be positive, but it doesn't really mesh enough with the NICE GL, in my view.

 

[Lou B Lou]

'Food improving exercise tolerance.'. Disgraceful statement. Thanks for trying to get it changed. Parts of that document read like it was written in 1994, not 2024.

 

[Jonathan Edwards]

Overall, I have mixed feelings about it. If it helps, it'll be positive, but it doesn't really mesh enough with the NICE GL, in my view.

Thanks for the input Adam.

I just find it hard to think who could have come up with such amateurish material. It seems that the working group involved had no power to inject some common sense. There are people around who could have written very good learning modules - you for instance!

We need some real science to replace all this guff. At the moment everything seems to be in a terminal state of whitewashing disinformation. I don't hold out any great hopes for a change in July but things cannot get much worse.

 

[MEMarge]

The plan is that there will be three modules, each covering a different severity. I was in the meetings and there was a lot of debate about this, but NHSE felt they couldn't adequately cover all severities and experiences in each of the short modules.

I advised against the long list of potential causes, given that same explanation for only covering one severity at a time. It's just wasted space.

I also pushed back against food improving "exercise tolerance" and said it was a) unevidenced and b) likely to cause problems. But when we first saw it, it was also when we were told the text had been set and couldn't be changed (only typos could be fixed).

Overall, I have mixed feelings about it. If it helps, it'll be positive, but it doesn't really mesh enough with the NICE GL, in my view.

Thanks for the work that you and others have done on this, @adambeyoncelowe

 

[Nightsong]

Some other quotes from this that are simply completely wrong:

Many patients with ME/CFS have poor NK cells so they have a reduced ability to fight and clear infections.
...
Some people with ME/CFS have overactive B-cells. It is uncertain what these are producing antibodies against and whether this means there is an underlying infection or an ongoing autoimmune response.
...
Steroid hormones, such as cortisol and adrenaline, get out of balance
...
A low cortisol activity, or even a normal cortisol in the presence of increased inflammation (pseudonormal), may lead to chronic activation of the immune system.
...
We produce immunoglobulins in response to infections.

Some people with ME/CFS (and also with long COVID) have very high or low levels of these immunoglobulins.

The amount of immunoglobulin in the blood however, does not necessarily mean that they are effective.

There was an opportunity here to change people's minds and shift opinion from a psychogenic model to well, no model but that of compassionate care and pragmatic management. Unfortunately, a lot of people in the NHS who might be otherwise open to this are not going to take it seriously.

There is some good material about PEM and so forth but it will probably be disregarded by precisely the intelligent and independent-minded physicians that we want on our side because so much of it is poor-quality & unevidenced. I can quite easily imagine some of the intended audience for this thinking "if that's the quality of argument, perhaps the psychogenicists are right after all". It might, in fact, be counterproductive.

There are also some typos that I noticed (e.g. "C. Exagerated stress response").

 

[bobbler]

Thanks for the input Adam.

I just find it hard to think who could have come up with such amateurish material. It seems that the working group involved had no power to inject some common sense. There are people around who could have written very good learning modules - you for instance!

We need some real science to replace all this guff. At the moment everything seems to be in a terminal state of whitewashing disinformation. I don't hold out any great hopes for a change in July but things cannot get much worse.

This

 

[DigitalDrifter]

It does not routinely* lead to death or progressive deterioration,

Not happy with that, I'm a permanent deteriorater, I've been 100% bed bound and unable to talk for many years.

 

[Cinders66]

I've got the following from the news item on AfME webpage:



So was he the consultant for the Devon ME/CFS specialist service for a long time before this?

I got the impression the feedback wasn't very good in Devon so I ask on the basis of there are merits to him being a 'fresh face' or having tried to change that as much as 'many years' I would guess?

I don’t know but his current description at Exeter says he “participates“ in the chronic fatigue service but he is clinical lead for the long Covid one. His main work is on other areas In older Adults . Bearing in mind there are few drs in the nhs ME/CFS service set up to draw from and outside the DHSC delivery plan representation, Action for ME don't seem to draw on theIt medical advisors much. David Strain | The Medical School | University of Exeter
https://medicine.exeter.ac.uk/people/profile/index.php?web_id=david_strain

 

[Cinders66]

Some other quotes from this that are simply completely wrong:


There was an opportunity here to change people's minds and shift opinion from a psychogenic model to well, no model but that of compassionate care and pragmatic management. Unfortunately, a lot of people in the NHS who might be otherwise open to this are not going to take it seriously.

There is some good material about PEM and so forth but it will probably be disregarded by precisely the intelligent and independent-minded physicians that we want on our side because so much of it is poor-quality & unevidenced. I can quite easily imagine some of the intended audience for this thinking "if that's the quality of argument, perhaps the psychogenicists are right after all". It might, in fact, be counterproductive.

There are also some typos that I noticed (e.g. "C. Exagerated stress response").

Aren’t we trying to reframe it as a biomedical model va the biopsychosocial? Rather than leaving it an empty space.

 

[Jonathan Edwards]

Aren’t we trying to reframe it as a biomedical model va the biopsychosocial? Rather than leaving it an empty space.

I don't think anyone should be trying to frame it other than as not understood and needing a lot more attention. Endless quoting of weak and unreproducible evidence about this or that finding just confuses people and lines the pockets of immunobabblers and the like.

 

[Sean]

I don't think anyone should be trying to frame it other than as not understood and needing a lot more attention.

This.

We must resist the completely understandable urge to provide an alternative model to compete with the psycho-behavioural model. It is not productive and does us no favours, and we have no obligation to do so.

The simple shitty reality is that very little is understood about ME/CFS and how to treat it. It still can't even be diagnosed to a high degree of reliability. The whole situation is just an appalling joke.

That is the message that we need to get out.