United Kingdom: ME Association news

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

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

 

Transcribed for readability:

 

From Facebook:

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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

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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

 

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:

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  • 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:

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  • Evidence for persisting viral infection or presence of a SARS-CoV -2 spike protein
  • Presence of micro-clots
  • Improvement following Covid vaccination

https://blogs.bmj.com/ebn/2022/11/1...n-about-the-cause-and-management-from-me-cfs/

 

I didn't know that Dr. Shepherd got ME from chickenpox.

 

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.

 

Who wants to take bets about whether this changes things? Is it just an information issue or something else. Perhaps I should see if my GP is now not broken.

 

I don't see how it can as long as the NHS information remains the same.

 

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.

https://www.youtube.com/watch?v=-_7tIrceufA

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

 

Situations Vacant: Fundraising Manager

Deadline for applications: Friday 16 June 2023 at 5pm.

https://meassociation.org.uk/2023/06/situations-vacant-fundraising-manager/

 

I haven't watched this

Long Covid talk with Dr Charles Shepherd

https://www.youtube.com/watch?v=PKcYXObFqYk