United Kingdom: ME Association news

BMJ Evidence-based Nursing: Long Covid – What can we learn about the cause and management from ME/CFS?

Dr Charles Shepherd

Hon Medical Adviser, ME Association @meassociation

Three years ago nobody had heard of Long Covid – the patient derived name for a variety of symptoms and continuing ill health that may affect around 10% of people who catch COVID-19 and which persists for three months or more.

The numbers are huge. Data from the Office of National Statistics indicates that over 500,000 people with Long Covid here in the UK are still unwell two years after catching COVID-19. And while some are improving or recovering, over 300,000 have significant limitations to their day-to-day activities. Long Covid is becoming a major cause of disability and absence from work, especially in the health and social care sectors.

Not surprisingly, Long Covid now receives more media attention than the infection that triggered it and vast amounts of money are being spent on trying to find the cause and an effective form of treatment.

But do some of the answers lie with what we already know about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) – a condition that often follows a viral infection and has very similar demographics, symptoms and research findings relating to the possible causation to Long Covid? I believe they do.

Let’s start off by going back to the beginning of the pandemic in 2020 when it soon became apparent that increasing numbers of people were not recovering from COVID-19.

Some had been seriously ill in hospital with many in this group continuing to experience cardiovascular and respiratory symptoms.

But there were lots of people developing Long Covid who had not been in hospital, not had a severe infection, and did not have any other health problems.

Long Covid has an almost endless list of symptoms – partly reflecting the fact that COVID-19 can involve almost any organ or tissue in the body. Common symptoms that may relate to organ or tissue damage from the time of the acute infection include breathlessness, chest pains, palpitations, loss of taste or smell.

But just as common are a cluster very disabling symptoms – cognitive dysfunction/brain fog, dysautonomia (including orthostatic intolerance and postural orthostatic tachycardia syndrome), debilitating fatigue and post-extertional malaise/symptom exacerbation, and muscle pain – that are highly characteristic of other post-viral syndromes, ME/CFS in particular.

So a significant proportion of people with Long Covid are also meeting diagnostic criteria for ME/CFS.

When it comes to the possible cause of Long Covid, several abnormalities have been identified that are already documented in ME/CFS:

    • Low level immune system activation and neuroinflammation
    • An autoimmune component
    • Reactivation of latent herpes virus infection – including Epstein-Barr virus
    • Defective muscle energy metabolism involving mitochondrial dysfunction
    • Downregulation of the hypothalamic-pituitary-adrenal axis and mild hypocortisolaemia
    • Overlap with mast cell activation syndrome
However, there are also findings that are not consistent with what we currently know about ME/CFS. In particular:
https://blogs.bmj.com/ebn/2022/11/1...n-about-the-cause-and-management-from-me-cfs/
 
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John Mac said:
BMJ Evidence-based Nursing: Long Covid – What can we learn about the cause and management from ME/CFS?

Dr Charles Shepherd

Hon Medical Adviser, ME Association @meassociation

https://blogs.bmj.com/ebn/2022/11/1...n-about-the-cause-and-management-from-me-cfs/
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I think this is the key part of the article. It's good to see it published:

As a charity we have been critical of the way in which many clinicians and researchers have failed to acknowledge the important clinical and causative overlaps between Long Covid and ME/CFS and the failure to realise that what we know about the cause and management of ME/CFS – especially the recommendations on convalescence, activity and energy management in the new NICE guideline on ME/CFS – can also help people with Long Covid.

The transfer of experience and knowledge between clinicians and researchers involved in both conditions should be a two way process. This is not happening and it can no longer be ignored.

Further information

The MEA guide to Long Covid and ME/CFS explains how we can help with Long Covid symptoms – debilitating fatigue and post-exertional malaise, cognitive dysfunction, unrefreshing sleep, orthostatic intolerance, PoTS etc – that also occur in ME/CFS
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Dolphin said:
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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Vital information about ME/CFS sent to all GPs in the UK, Channel Islands and Isle of Man!
https://meassociation.org.uk/2022/1...ps-in-the-uk-channel-islands-and-isle-of-man/

Technically it was sent to each practice rather than each individual GP.
 
I think it’s absolutely right to get this information out to Practices. Its one element of getting change to happen, giving GPs sensible information about ME and highlighting the new guidelines, education package. It may change things a bit for some people. EG People can ask their GP if they’ve seen the MEA bundle, gives an opportunity to raise ME.

Obviously to get things moving it’s a multi strand approach that’s needed including tackling NHS central organisation for overall strategy, and definitely they need to sort central comms such as web content. Assuming this is where Forward ME are focusing efforts.

And critically tackling the Integrated Care Boards at local level for changing the situation in terms of what service they require from GPs and hospitals. As @Suffolkres is working on in Suffolk area

Also challenging existing services about inaccurate information and need to be NICE compliant in what they deliver.
 
Huge thanks to the MEA for this massive mailing. I hope at least GP's take the time to read the materials and ensure they are acting appropriately with their patients. Given how little interest my GP practice have shown over the years I'm not hopeful, but maybe the inclusion of Long Covid may spark some interest.
 
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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Nobody is disputing the reality of social, psychological, or medical consequences for almost all illnesses, nor the need to address them, if required.

What is being disputed is that the unproven claim that social and psychological factors are the cause or defining feature of ME, and that treatments based on that claim are effective, appropriate, and safe.

Either the RCGP doesn't understand this, or they are being disingenuous.
 
Sean said:
Nobody is disputing the reality of social, psychological, or medical consequences for almost all illnesses, nor the need to address them, if required.

What is being disputed is that the unproven claim that social and psychological factors are the cause or defining feature of ME, and that treatments based on that claim are effective, appropriate, and safe.

Either the RCGP doesn't understand this, or they are being disingenuous.
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I don't think I've ever seen anything BPS that didn't explicitly or implicitly reattribute the consequences as the cause. Reattribution of symptoms and impacts is basically the basis of how BPS is applied to chronic illness. There is almost nothing without it because it is strictly associative and everything significant about it happens after. Pretty much only straw-grasping stuff like childhood trauma and the most possibly generic construct of life events can even predate the illness, everything else is obviously a consequence of, the linear passage of time demands it.

Extremely disingenuous, but probably also sincerely believed. The worst possible combination. Which is why things are so broken right now, ideological orthodoxy is awful anywhere, disastrous in healthcare.
 
Situations Vacant: Communications Officer, closes 1st Feb 2023.

"With an increasing demand on core services, we are looking for a part-time, enthusiastic, responsible, and well-organised person to join the communications team. You will report directly to the head of communications and your responsibilities will include:

  • Reviewing daily news alerts for PVFS, ME/CFS and Long Covid,
  • Creating, loading, and publishing approved website blogs,
  • Creating and monitoring website surveys and e-Newsletters,
  • Creating suitable graphics within Canva for the website and social media,
  • Contributing ideas and planning future team activities,
  • Monitoring social media comments,
  • Helping to organise and maintain the website and social media platforms,
  • Helping to maintain website databases, ‘Medical Matters’, mailing lists, and the website shop,
  • Helping to answer requests for support and information by providing holiday and sickness cover. "
https://meassociation.org.uk/2023/01/situations-vacant-communications-officer/
 
I haven't listened myself.



Fresh RB Podcast: Everyday People, Talking Health. Episode 43 **TW: Mentions Attempting Suicide**

ME Association
651 subscribers



41 views 4 Apr 2023 #PVFS #MECFS #COVID19
Fresh RB Podcast: Everyday People Talking Health: Getting To Know ME - Accepting & Surviving M.E.

*Trigger Warning: Mentions Attempting Suicide* - Please utilise the speed settings if you need to read it to be slower in order to read the subtitles

Russell Fleming, Communications Manager to the ME Association has been living with Myalgic Encephalomyelitis (ME/CFS) for over 20 years. He shares his diagnosis journey and how acceptance was key to surviving his ordeal.

Find this podcast and many others covering health issues here: https://www.freshrb.com/health-podcast With thanks to Kondwani and the Fresh RB CIC/Silent Elephant Podcast team for working on this podcast and allowing us to share it on the ME Association's You Tube channel to raise awareness of ME/CFS and Long Covid. If you'd like to read Russell's story (as mentioned in the podcast), please see the links below: Part 1: https://meassociation.org.uk/rfp1 *Trigger Warning* Part 2: https://meassociation.org.uk/a7ka To learn about ME/CFS, please visit our website as we have a wealth of information covering #PVFS, #MECFS, #COVID19, and #LongCovid Please follow us on social media @meassociation For other helpful links, please visit our Linktree URL: https://linktr.ee/meassociation
 
I think Charles Shepherd is wonderful.

I don't know how he has managed to keep going during the bleakest years in the UK regarding ME/CFS. Seriously. He has put up with so much shit. He's been patronised by medics for years, who themselves got it totally wrong.
The man deserves a medal!

Much as I appreciate him ...
... I really do get annoyed by how ME/CFS comes across when he describes it. He makes it sound like it's some Noddy illness, with a bit of fatigue and the odd ache and pain.
Even his description of GET for ME/CFS in this video, does not reflect just how much harm and in some cases, permanent deterioration, GET has caused.

Also, in this video at least, he makes it sound as though Long Covid is far more serious. There's the Noddy ME/CFS side of it (a bit of fatigue and the odd ache and pain) and then there's the serious side = goes in to a long explanation of post Covid research including known diseases that can result from a Covid infection.

Does anybody else feel this way?

Is Long Covid more serious?
I thought a recent paper from Leonard Jason et al showed that the ME/CFS cohort were actually more severely disabled later down the line.

... or am I missing something?

Apart from that (!!), I think this is a good presentation, directed at the laymen.
 
I only watched the first 20 minutes or so at first and I had already switched off.
How many times does he have to bring up chickenpox?
Balance problems were I thought common among pwME; not just those who had chickenpox as a trigger.
I carried on and skimmed through the rest; I didn't hear any mention of PEM or PESE?

Reminds me of the old MEA video from 2009 on the NHS website which is in dire need of replacing, particularly given the changes in the guidelines, the rise of Long Covid and the increasing interest in post viral illness.
 
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