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

Nightsong said:
I'm looking at the slides below the Canary story. Did they upload the wrong document? Either way, whatever this is, it needs to be extensively reworked.
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What I see under the article is the entire set - or at least was far s it has got. Module 2 comes in after the introduction and stuff about causes etc. It focuses on management and manages to say nothing much while appearing to justify the involvement of a team of people doing nothing much. A number of suggestions are inappropriate, such as eating salt or giving fludrocortisone, or trying acupuncture etc.

The whole thing to me is typical of 'professions allied to medicine' teaching materials although much of the content can only really apply to GPs (diagnosis, referring, prescribing). It would drive me mad if I was a GP because there are no facts on which to judge what the recommendations will amount to in practice (e.g. 'early intervention' - earlier than what?).
 
A few more random observations on the module(s):

* I don't think the paragraphs on FM are adequately supported either, and as to the idea that "[m]any consider fibromyalgia and ME/CFS as different points on the same spectrum of disease" - even if many people did think so that does not make it true.

* Under the "stigma" section the phrase "[t]he inappropriate framing of ME/CFS as a disease of depressed menopausal women" is not a phrase I think should be in there. Certainly the effect of disbelief, denial and stigma could and should be explored, but more carefully than this.

* "Cognitive rehabilitation techniques"... "Acupuncture.. yoga, or meditation... [t]he common goal of all of these is to improve vagal (parasympathetic tone)"... "compromised immune responses" - all of this stuff needs to be cut.

* "The absence of universally accepted diagnostic criteria tailored to the paediatric population adds to the challenge" - that seems to undermine the NICE guideline.
 
Jonathan Edwards said:
Do we know who, if anyone, is still in a position to contribute to the audit of the modules? Do the working group still get drafts to see? It seems as if they do but are any members here involved - such as @adambeyoncelowe. It really needs a re-think. When we already have reasonably good guidance from NICE this seems to be entirely a backwards step.
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I received the draft approx two weeks ago with 9am deadline today comments. I have not been involved in development of the modules.

I've detailed many inaccurate, unhelpful and misleading issues. Plus I do not think it is helpful for primary care. I think it will be confusing and will do little to improve attitudes towards pwME. Education likely minimal.

Minimal reference to NICE, PEM, exercise/activity etc. Linking to unhelpful advice re sleep, cognitive rehabilitation, pain etc. And so on. Long list. It doesn't read as though ME is understood well by the authors.

I shared my detaled comments with NHS England and Dr S. Also, MEA and AfME.

David's email BCCed in the recipients so I cannot see who received the draft to review. I presume it is the whole group of people involved in the working group for Attitudes and Education.

Needs a rethink.
 
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A question that occurs to me is why the modules are presented as if as lecture slides rather than normal text? Medical education is traditionally presented as prose text that allows one sentence to depend on another. I can understand why there might be question pages at the end of each section but I don't see why the material isn't ordinary prose.
 
Jonathan Edwards said:
Do they not see that the project needs a fresh start?
The material is inappropriate. It is full of ungrounded statements and gives no clear evidence based advice on how to actually make decisions.
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I have forwarded my comments along with the slides to Stephen Holgate, Nina Muirhead, Shaun Qureshi, Peter Barry and Willy Weir (who was also in the Attitudes & Education ME/CFS DHSC meetings). I have suggested a reset/restart to the process.

I have a suspicion - and it's only that, that perhaps they are not in the loop as this is an NHS England initiative. And David sent out the slides for review by BCC so I was unable to see who else they went to.
 
Nightsong said:
A few more random observations on the module(s):

* I don't think the paragraphs on FM are adequately supported either, and as to the idea that "[m]any consider fibromyalgia and ME/CFS as different points on the same spectrum of disease" - even if many people did think so that does not make it true.

* Under the "stigma" section the phrase "[t]he inappropriate framing of ME/CFS as a disease of depressed menopausal women" is not a phrase I think should be in there. Certainly the effect of disbelief, denial and stigma could and should be explored, but more carefully than this.

* "Cognitive rehabilitation techniques"... "Acupuncture.. yoga, or meditation... [t]he common goal of all of these is to improve vagal (parasympathetic tone)"... "compromised immune responses" - all of this stuff needs to be cut.

* "The absence of universally accepted diagnostic criteria tailored to the paediatric population adds to the challenge" - that seems to undermine the NICE guideline.
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yep this seems pretty dated cliches. Can't have come from the 2021 guidelines which I'd have thought would have been the starter.

And to me some of these seem 'new' and possibly rather than 'debunking' are potentially going to put new myths out there by mentioning things that don't need to be brought up and putting ideas in people's heads by doing so that are perpetuating red herrings rather than aiding clarity.
 
"NHS England launches the Second E-learning Module on ME/CFS"
We are pleased to share the latest NHS England E-Learning module, which is part of the DHSC Delivery Plan on ME/CFS and aimed at community healthcare professionals.

The is the second of a three-part series of continuing professional development (CPD) resources. The final module will be about severe and very severe ME/CFS and is expected by the end of April.
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https://meassociation.org.uk/2025/01/nhs-england-launches-the-second-e-learning-module-on-me-cfs/
 
I've just looked through the final version of the second module - it's available at:

https://learninghub.nhs.uk/Resource/60400/Item

if you prefer to look at the original rather than the MEA-reformatted version. A few brief comments:
ME/CFS is a long-term health condition which is poorly understood and remains a challenging diagnosis due to its multifaceted nature and the absence of definitive diagnostic tests. It is currently under-diagnosed, particularly amongst people from ethnic minority communities and those from socially disadvantaged communities.
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We don't know that. It may simply occur at a higher rate in northern European populations, or even have a geographically distinct distribution - both are factors in MS. I would not attribute the differing rates of diagnosis to under-diagnosis without significantly greater information.

The "Tom" case study is... highly atypical. Incontinence, chronic hiccups?
Possible disease mechanisms include:
impaired immunoglobulins
microclots
autonomic nervous system dysfunction
genetics
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Sigh. I was hoping "microclots", at least, wouldn't make it through. The severity level descriptions are adapted from NICE - good.
ME/CFS patients often exhibit immune system dysfunction, which can leave them more susceptible to infections.
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Unevidenced. Why not just say there are reports of ME setbacks following intercurrent infections?
The inappropriate framing of ME/CFS as a psychosomatic, behavioural and/or psychological condition, along with a lack of single proven pathophysiological mechanism is responsible for some of the associated stigma.
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From an advocacy perspective as well as something aimed at NHS professionals this is very useful to have in an official NHS publication.
Unfortunately, in the absence of proven treatments, or evidence-based interventions there are significant differences in funding for, and therefore the ability to provide adequate ME/CFS services around the country.
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Doesn't really get to the nub of the problem, which is that the services are providing non-evidence-based and potentially harmful interventions. But I guess that wouldn't clear the legal department.
Often other non-ME/CFS symptoms are not fully considered and dismissed as additional manifestations of ME/CFS
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This is important. Also the diagnostic criteria section is adapted from NICE & looks quite good to me.

I don't really like the content in the "Aligned and overlapping diagnostic conditions" section (the three "aligned and overlapping" conditions are fibromyalgia, MCAS and FND) for the same reasons I gave when the earlier version of this was posted by the Canary.

The section encouraging clinicians to involve themselves in research is a welcome addition.
Many people with ME/CFS report a preceding viral infection, the most common being threEpstein Barr Virus, cytomegalovirus and human herpes virus 6A.
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Don't think we know that for CMV or HHV6A. Also there's a typo there.
ME/CFS patients often exhibit immune system dysfunction, which can affect their response to infections and acute diseases.

This may result in:

a higher risk of contracting infections: due to immune dysregulation
slower and more complicated recovery: due to their compromised immune responses.
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Wrong - this may make people believe that pwME are immunocompromised in the classical sense. (We are not neutropenic, we do not have known clinically significant defects with cell-mediated immunity, immunoglobulins or the complement system, and we are not predisposed to opportunistic bacterial or fungal infections so there is really no basis for this claim.) Again, why not just say there are reports of ME setbacks following infections?

Welcome that there is acknowledgement of the difficulties we face in accessing healthcare & that we may be averse to doing so due to prior negative experiences.
 
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Just glancing through some of the treatment section

Symptom management
Effective symptom management requires a tailored approach based on the individual’s predominant symptoms.

Management can involve both pharmacological and non-pharmacological interventions.

Pain managment
  • Non-steroidal anti-inflammatory drugs (NSAIDs) and paracetamol for mild pain.
  • Short-term opioids may be used for moderate to severe pain, although should not be continued long term.
  • Sumatriptan and/or other triptans may be used to relieve headache or migraine, consider referral to tertiary headache clinic after 14 days of symptoms in a single month.
  • Tricyclic antidepressants (for example, amitriptyline), duloxetine or gabapentinoids (for example, gabapentin, pregabalin) for neuropathic pain.
  • Referral to pain specialists for severe or refractory pain.
Sleep disorders
  • Sleep hygiene education (regular sleep schedule, avoiding stimulants).
  • Short-term use of sleep medications if necessary.
  • Cognitive behavioural therapy for insomnia (CBT-I).
Cognitive dysfunction
  • Cognitive rehabilitation techniques.
  • Memory aids and organisational tools.
  • Encouraging mental activities that are enjoyable but not exhausting.
  • Pacing of cognitive activities.
Orthostatic Intolerance
  • Increased fluid and salt intake.
  • Compression garments.
  • Medications such as fludrocortisone or midodrine in severe cases.
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Sleep hygiene and CBT for sleep - no evidence and can be harmful for pwME
Cognitive rehab - no evidence
OI is confused with POTS. I'm no expert, but surely a blanket recommendation of increased salt for OI could be harmful. What if the pwME has high blood pressure. What if their OI is not POTS.

Alternative therapies
Some patients find relief with complementary therapies such as acupuncture, yoga, or meditation. While evidence is limited, these can be considered as adjuncts to conventional treatment.

One of the common goals of all of these is to improve vagal (parasympathetic tone). 
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That section should have no place in an NHS learning module.
I am aware of pwME who have been made worse by all 3 of those activities. And there's no evidence they are helpful for ME/CFS, let alone that we need parasympathetic tone improvement.
Very disappointing.

Multidisciplinary teams
A multidisciplinary approach
A multidisciplinary team (MDT) approach ensures comprehensive care.

Key team members may include:

  • the individual’s GPs and/or consultants with a special interest in ME/CFS
  • physiotherapists: for tailored activity and mobility programmes
  • occupational therapists: for energy conservation strategies and adaptations at home or work
  • psychologists/psychiatrists: for mental health support
  • dietitians for nutritional assessment and support
When possible, individuals should be referred to a specialist ME/CFS service. These specialist MDTs have an interest in managing this complex disease.
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No mention of specialist nurses. We don't need physios for tailored activity programs thank you. We need pacing information and support not programs.

The key principles of management
Any activity, whether physical, mental or emotional, can trigger post-exertional malaise (PEM) and/or other symptoms.

Unlike other conditions, progressive exercise programmes do not benefit people with ME/CFS. Recurrent episodes of PEM may accumulate and therefore this may cause permanent damage.

Guided by this, the key principles of management of ME/CFS are to plan, pace and prioritise activity.

1. Plan
The first step is to develop a person-centred care and support plan.

By exploring functional capacity and impact of the symptoms on the psychological, emotional and social wellbeing, a care plan can be agreed between the person with ME/CFS and their family or carers. The aim of this plan is to facilitate as good a life as possible, however, even with optimum management many remain significantly debilitated by ME/CFS.

2. Pace
Pacing is a cornerstone of ME/CFS management, involving balancing activity and rest to avoid exacerbations of symptoms.

Key strategies include:

  • breaking tasks into smaller, manageable parts
  • alternating periods of activity with rest
  • using a diary to track symptoms and identify triggers
3. Prioritise
Prioritising activities of greatest importance whilst avoiding the activities which exacerbate symptoms the most can help with pacing and symptom management.
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Hmm. Some good bits. It starts well but then there's diary keeping and no mention of other aids like wearables and apps.

I know there's going to be a separate module on severe and very severe, but the bits I've read of this so far make it sound much milder than reality.

This bit bothers me
By exploring functional capacity and impact of the symptoms on the psychological, emotional and social wellbeing, a care plan can be agreed between the person with ME/CFS and their family or carers.
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I really don't want to have to see a multidisciplinary team to explore my psychological, emotional and social wellbeing in order to get a care plan - they are none of their business. That's not the sort of care plan I would want. My care plan would be about practical help with daily living and medication for symptoms, and a statement of my functional limitations and care needs for benefits.
 
@Trish Wrote:


"I really don't want to have to see a multidisciplinary team to explore my psychological, emotional and social wellbeing in order to get a care plan - they are none of their business.

That's not the sort of care plan I would want. My care plan would be about practical help with daily living and medication for symptoms, and a statement of my functional limitations and care needs for benefits.'


THIS

.
 
Lou B Lou said:
@Trish Wrote:


"I really don't want to have to see a multidisciplinary team to explore my psychological, emotional and social wellbeing in order to get a care plan - they are none of their business.

That's not the sort of care plan I would want. My care plan would be about practical help with daily living and medication for symptoms, and a statement of my functional limitations and care needs for benefits.'


THIS

.
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And I don’t want people with the BACME beliefs about us and requisite disrespect due to their misunderstanding abd ignorance near me or speaking for me and about me to others

after so much harm still caused by it that’s the bare minimum I should expect to change ?

such a tired plan from the same people who don’t want to drop their false beliefs that we are deluded or stressed shouldn’t be given the dangerous powers implicit in such things irrelevantly being in such a care plan and such hands - which ps are not implicit in their professional qualifications, knowledge or the little experience that wasn’t based on a harmful wrong paradigm

No one expects to go to a biomedical clinic gif a diagnosis and risk a physio writing a mental health narrative about then that wrecks their access to future care and other dangers as the end result. It’s just not professional or acceptable

snd this, the power difference it would give to such staff inappropriately, the false beliefs not being solidly deprogrammed and not accepted from old staff equating to disrespect gif both patients and real truth and fact of experience vs their preferred untruth creates a situation that makes patients obvious sitting ducks to coercion and it’s as unsafe and inappropriate for being abused or misunderstandings due to inappropriate belief systems and plain dislike of how the old guideline was debunked being taken out on or ‘aimed to be disproven’ on new vulnerable patients’ surely without enough staff change the old guard who have such a conflict are outnumbered by new with more respect and a different mindset /belief system?
 
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