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

[Dolphin]

Resource

learninghub.nhs.uk

Home Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) elearning Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) elearning
Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) elearning

Managing severe ME/CFS​

Certificate available: complete this course to be

This session offers guidance to healthcare professionals who support, or have an interest in, the management of people living with severe and very severe ME/CFS.
It provides practical, evidence-based recommendations in 4 key areas: strategies for care in the community, nutritional support and risk management, managing risk in hospital care and pharmaceutical support.
The session is available to people working in NHS, government and educational sectors.

Resource details​

[td]Contributed by:[/td] [td]Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) elearning[/td] [td]Authored by:[/td] [td]Professor David Strain[/td] [td]Licence:[/td] [td]© All rights reserved More information on licences[/td] [td]Last updated:[/td] [td]04 September 2025[/td] [td]First contributed:[/td] [td]04 September 2025[/td] [td]Audience access level:[/td] [td]Full user[/td]

 

[Nightsong]

I spotted that this had been released. I've been particularly unwell recently so haven't been able to review it thoroughly; however, based on a quick skim, there is a lot of good in this. Briefly - it includes:

- acknowledgement that there are no evidence-based treatments;
- a realistic story of very severe ME/CFS written from the perspective of a parent with a daughter with vsME;
- realistic delineation of mild/moderate/severe/v severe, & frankly acknowledges the extremity of vsME;
- goes through possible adjustments re. lighting, sound, touch & movement sensitivity, chemicals & smells; adjustable hospital beds & cradles, tilt-in-space wheelchairs, adaptive communication aids, emotional support, medication hypersensitivities - very attuned to the needs of the most severe patients at the most severe end of the scale
- recommends the use of GP home visits, community nursing and even palliative care where necessary; recommends development of ME/CFS community-based services, avoidance of unnecessary hospital admissions due to sensory issues, exertion, etc worsening symptoms;
- sections on nutritional support, including the need for enteral & even parenteral support where nutritional needs not met;
- goes through reasonable adjustments for e.g. surgery for other conditions
- suggests possibilities for medications to treat chronic pain & insomnia

It does indulge some unevidenced theories about immune dysfunction, viral reactivations, POTS, MCAS, SIBO etc that will undoubtedly cause more knowledgeable physicians to take the advice with a grain of salt, or to disregard it entirely. There are a few things that are wrong (e.g. the suggestion that "seizure-like episodes" can be a symptom of ME/CFS; that one will cause confusion). The sections on methylphenidate, LDN, fludrocortisone etc probably should have been relegated to a research-avenues section. Despite this, in terms of the recommendations for practical management, it is a very significant improvement on the advice that is currently out there for NHS clinicians (e.g. BACME's guide).

 

[Jonathan Edwards]

I am hoping I can access this through UCL but cannot do that just yet.

 

[Amw66]

I don't think FND overlaps with ME/CFS to a degree that warrants the former's inclusion in this document, and I think it's a mistake to put it in there.

Aside from PEM, there's a distinct immunological component to ME/CFS — the source of 'malaise', sore throats, tender lymph nodes, etc. This doesn't seem to be present in FND. FND seems to often involve movement issues that are not common in ME/CFS — problems with gait, spasms, paralysis, etc.

I certainly wouldn't put FND in a list of three conditions with similar presentations to ME/CFS. Dysautonomia/OI/PoTS should have been included instead.

Paediatrics are already liberally applying the diagnosis .
Even if you are found to have other ( more accepted) conditions which account for symptoms, the label never goes away.

 

[Dolphin]

Resource

learninghub.nhs.uk

Home Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) elearning Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) elearning
Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) elearning

Managing severe ME/CFS​

Certificate available: complete this course to be

This session offers guidance to healthcare professionals who support, or have an interest in, the management of people living with severe and very severe ME/CFS.
It provides practical, evidence-based recommendations in 4 key areas: strategies for care in the community, nutritional support and risk management, managing risk in hospital care and pharmaceutical support.
The session is available to people working in NHS, government and educational sectors.

Resource details​

A comment from a poster on Bluesky for what it is worth:
I have just completed the severe module. I can’t believe it, but it’s GOOD. The limited access is an issue. What about agency care managers etc? It’s clear, no BPS, has some really crucial stuff. If pts can’t access they can’t use it for self advocacy tho, as they won’t know it’s the official line.

 

[V.R.T.]

There are a few things that are wrong (e.g. the suggestion that "seizure-like episodes" can be a symptom of ME/CFS; that one will cause confusion

I definitely have had extreme rigours that could be described as seizure like episodes since I became severe and I have heard other sufferers say likewise.

 

[Cinders66]

I definitely have had extreme rigours that could be described as seizure like episodes since I became severe and I have heard other sufferers say likewise.

This is not atypical:
"Physically, singing hurts because of my condition. I am very sensitive to sound, which can trigger profound head pain, as well as a flare up of all my symptoms. If I over-exert myself or am exposed to high levels of sound, I can experience seizures and even periodic paralysis"
By Kara Jane Spencer

My Dreams, My Pain and My Music

With my album close to completion, find out more about what inspires my music What my album means to me The album means an incredible amount to me. It represents my journey so far: it&#…

karajanesings.com

 

[Nightsong]

A few more notes on the module:

- I wish we could move past the whole "complex, multi-system, chronic disease" framing, which is how the module introduces ME/CFS.

- "Possible disease mechanisms include: impaired immunoglobulins; persistent viral reservoirs; autonomic nervous system dysfunction; genetic predisposition". Well, other than genetic predisposition, there is very little evidence for this. Really time to move past the persistent-virus idea - it may have been logical for Ramsay to think that but no evidence supporting it has emerged in the decades since.

- The suggestions on establishing a low-stimulus environment seem sensible and practically minded.

- There are some elements of the included story (of a mother whose daughter has very severe ME) that are rather atypical (EpiPen? Leaky gut?) and should have been edited out, or another case chosen.

- There is relevant advice on contractures etc, along with an acknowledgement that PEM may make any activity intolerable. There are interesting suggestions on adapting communication for the most severe, such as text-to-speech apps, flashcards, etc.

- "Medications should be started at low doses and titrated slowly, irrespective of what they are used for" - I wouldn't go that far. Certainly that is advisable for analgesics, sedatives or psychotropics.

- Something that is very welcome is the need for home-based medical services - e.g.

GP home visits or virtual appointments will minimise the need to travel, and therefore risk of PEM. This should be considered for all appointments, not just for the management of ME/CFS.

This kind of thoughtfulness is very rare from the NHS at present.

- "There is a need to develop specialist ME/CFS community services to intervene earlier in the hope of preventing disease progression" - not sure about this.

- The section on "immune dysfunction" really needs to be removed. In the section on hospital admissions for other causes it says that there is a "[h]igher risk of severe or prolonged illness due to immune dysfunction". This kind of thing means that serious academic physicians are going to disregard the information in this module. The advice to "use lowest possible dose of anaesthetics and opioids" is unwise. The information about LDN may encourage some doctors to try to prescribe it off-label, which is also unwise. Similarly, the advice on pharmacological management of POTS & MCAS should have been omitted, as should mention of "SIBO".

- The module seems to assume that specialists in ME/CFS actually exist and are sensible; unfortunately, we know that is not true.

- The suggestion of "pre-hospital planning" with arranged accommodations for sensory needs, a low-stimulus environment, etc is very welcome.

I am hoping I can access this through UCL but cannot do that just yet.

The site seems to accept any .ac.uk email address - but if you run into problems, I made a PDF of the module for my own ease of reference. . .

 

[Kitty]

Given that there seems to be so much to congratulate them on, I wonder how they'd respond to constructive feedback about a few of the most problematic bits?

Specifically, I mean the things most likely to raise professional hackles.

As a patient I wouldn't be concerned about the thinking behind things like:

...specialist ME/CFS community services to intervene earlier in the hope of preventing disease progression.

as in some senses it would help. Where people are so ill they need PEG feeding it presumably is best to start as soon as possible to prevent deterioration; also, putting severely ill people through difficult-to-access appointments in distant hospitals can result in worsening. It's just that specific wording, 'disease progression', which is probably inaccurate when there's no pathology.

- The section on "immune dysfunction" really needs to be removed. In the section on hospital admissions for other causes it says that there is a "[h]igher risk of severe or prolonged illness due to immune dysfunction". This kind of thing means that serious academic physicians are going to disregard the information in this module.

I agree, but it almost sounds as if someone left it too long after the meeting to decipher their scribbled notes. There is a risk of severe or prolonged illness after hospital admission, and it's even possible it's a near-universal consequence. It's just that the cause isn't some hand-wavy immune thing, but the after-effects on ME/CFS of treatment, surgery, or simply having to spend time in a hospital environment.

[Edited to add one word for readability]