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'Acceptance' of ME and COVID post-viral fatigue - radio programme

I haven't listened to this yet - it's on BBC Radio 4:

https://www.bbc.co.uk/sounds/play/m001n1p2

"Travel writer Lois Pryce was hit by a crippling post-viral fatigue after getting Covid in March 2020. She went from somebody who solo motorcycled around the world to somebody who couldn't walk to the corner shop. A big turning point in her recovery was when she realised she couldn't fight it - she had to accept it. Today she talks about this idea of acceptance with author and human rights activist Yasmin Khan, who was diagnosed with chronic fatigue syndrome after suffering a debilitating burnout in 2011."

 

I've been listening to this in little chunks. Both interviewees talk about "recovery" but they agree "you never completely recover - you just learn that you have to manage your energy".

Before illness LP describes herself as always busy and defining herself by productivity/achievement. So when she had had Long Covid for a year and was getting worse, and realised she had to "stop fighting the situation", her way of doing that was to reframe rest time and restful pursuits as "building up energy" rather than unproductiveness. She saw a life coach who told her to do less, after which she quit her job. She also did a "brain retraining programme" where she learned to "do everything at 70% - even opening a cupboard".

They talk about social pressures to be constantly on the go, and the difficulty of accepting that other people just won't understand. They also talk about reading, writing, creativity, dancing etc as contributing to healing and relaxation.

"What would you say to people who might be in a similar situation with Long Covid or chronic fatigue or burnout?" - YK's answer is "you can get through it... I continue, like most people who have these illnesses, to have periods of my life which are harder to navigate, when my energy levels crash... what I now have is quite a nice toolbox... maybe I'll do a yoga nidra, completely clear the diary for a few days... it's OK to step out of life, it doesn't mean that you'll be left behind..."

Basically it's aimed at people in a milder state of illness who might need some help/permission to slow down their daily activities and respond to what the body needs. No suggestion that this might not be a useful message for those who have had to cut out most activities already (fair enough, I suppose, it's just their personal experiences).

 

Yes - I've listened to it now and wasn't terribly impressed - it didn't sound very informative and was a bit too optimistic!

 

So, pacing? A bunch of words to not say pacing while meaning pacing. Its real meaning and intent.

Obviously you don't need 'brain retraining' to learn to do less. And this isn't about accepting, it's about adapting. If you 'accept' without adapting it's meaningless. But you can adapt without accepting. I will never accept this state of existing. It is unjust. But I have adapted. The rest is basically personal philosophies to get people to actually do what it takes, which is so much harder than most people think.

 

Interesting article in the Nursing Times about something we've been discussing here recently - "Why more nurses are needed in ME and Long COVID services":

Quotes from MEA, including from the nurse they've appointed to lead their one-year pilot "health and social care project", as well as BACME's Gregorowski who is quoted as saying it's an "excellent idea". A "nursing academic" is quoted as being unsupportive of the idea, saying that a broader group of "post-viral specialist nurses" would instead be beneficial (ME/LC turf war?) & there's discussion of the merging of ME & LC services.

https://www.nursingtimes.net/workfo...ded-in-me-and-long-covid-services-06-11-2024/

 

Now in the print edition as well. Interesting that the MEA has suggested a Macmillan-like network of nurses (something we also discussed here previously):

 

I think these threads do get read .

 

Some quotes from Cornwall:

"She said their nurse had initially applied for an OT vacancy on the team but was “so good and so interested” that she was hired as a nurse. Now, the nurse takes the lead on visiting patients at home."

Which seems to validate the idea that the best professional to add to a doctor is a nurse with OT skills.

And:

"“She does a lot of the pain management [and] some of the fatigue management,” noted Ms Wilson, who said she liked to have a “broad church” of specialties on the team and multidisciplinary working was key."

Which seems less apt!
I wonder what fatigue management is?
Why do we need lots of healthcare professionals when one or two can multitask?

 

It depends what it means, really. OTs do it as part of their work, but it's mostly about maximising movement efficiency by making changes to home and work environments.

That sort of fatigue management is genuinely helpful. Most of it's basic common sense, but it's still really good to have a health professional say it. People with ME/CFS can seem a bit needy at the best of times, and some of us probably hold back from making changes that affect family members and colleagues because we feel we're already asking quite a lot of them.

 

It sounds as if BACME is slowly waking up to the problems. They have the wrong answers, but at least they're beginning to grapple with the questions.

MEA quote re Macmillan-style nurses "put forward to the charity's trustees as something it could potentially sponsor" - I like the idea & it would be interesting if MEA tried to get this off the ground. Doesn't AfME still have a clinical service of its own? - maybe something that they could work together on?

The lack of support from the LC associated people is disappointing & I think there's a broader problem here. In the Lancet today there was an article about "learning from Long COVID" by Alwan and al-Aly (link here for the few of us who can access it) in which there was no mention whatsoever of ME/CFS. This desire to create a broad grouping of "post-infectious" conditions & to continue to have LC separated out strikes me as misguided.

 

Not sure where to post this.

ME Association:

University of Exeter: Long Covid could cost the economy billions every year

"Patients were asked to complete questionnaires on the app about how long Covid was affecting them – considering the impact of the condition on their day-to-day activities, levels of fatigue, brain fog, health-related quality of life, relationships and ability to work.

The study found that on average, all the individuals who had been referred to long Covid clinics in the UK reported little improvement in their ability to perform day-to-day activities, fatigue, quality of life and ability to work over the first six months after seeking help for their symptoms."

Read more:
https://news.exeter.ac.uk/faculty-o...d-could-cost-the-economy-billions-every-year/

 

If the study manages to say "This approach isn't working" to government, it'll have been well worth doing even if the results were entirely predictable.

 

From clips of the COVID inquiry I see on Xitter, when they talk about LC and the context of clinics, it's always with the clear assumption that they are very effective. Talks about making more referrals, what capacity they have, new clinics and so on.

And yet pretty much all patient testimonials point out that they are totally ineffective.

It's truly two competing universes. What most health care professionals and what the vast majority of patients talk about, despite talking about the same thing, may as well be from parallel universes. There is simply not getting through, it has been politically decided that they are effective and no evidence otherwise seems to make a difference. And either the professionals can't tell the difference, or simply repeat what they have been ordered to, or a combination of both.

 

Last day to Respond to the NHS Health Research Authority Inclusion and Diversity Guidance informal consultation

https://www.hra.nhs.uk/about-us/news-updates/help-shape-our-new-inclusion-and-diversity-guidance/

 

The i paper
Army to recruit soldiers with ADHD, autism and ME amid staffing crisis

quote:
The Ministry of Defence will allow young people with ADHD, autism and chronic fatigue to join the armed forces in a bid to tackle the recruitment crisis, The i Paper can reveal.

In a historic move designed to transform its intake of soldiers at a time of increasing global instability, the MoD has scrapped dozens of strict recruitment rules which meant hundreds of people a year wanting to serve were rejected.

The i Paper has obtained the full revised list in the MoD’s “joint service manual of medical fitness”, which discloses the new medical requirements for those wishing to sign up as soldiers. Those suffering from a range of certain conditions will now be considered “fit until proven unfit” compared with previously being rejected.

 

BBC Bedbound patient facing delay feels 'buried alive'

quote:

A woman left bedbound following a Covid infection four years ago has criticised her NHS care after being told she faces a 40-week wait to see a hospital specialist.

Deborah Seymour, from Scarborough, has been diagnosed with illnesses including Long Covid and ME, but despite tests no physical cause has been found for other symptoms including severe head and neck pain.

The 50-year-old, who said she felt "buried alive", was initially told by York Hospital she faced a year-long wait to see a neurologist, but it has since been reduced to nine months.

 

NHS GP shares common causes of fatigue warning 'never ignore' these symptoms

 

Source: UK House of Commons Date: December 17, 2024 URL: https://questions-statements.parliament.uk/written-questions/detail/2024-12-09/18782

[Written Answers]

Fibromyalgia: Research ----------------------

Peter Fortune

To ask the Secretary of State for Science, Innovation and Technology, how much Government funding there was into fibromyalgia research in 2023-24; and which public bodies provided that funding.

Feryal Clark

DSIT funds medical research through UK Research and Innovation (UKRI) and the Department of Health and Social Care funds research through the National Institute for Health and Care Research (NIHR).

UKRI's Medical Research Council (MRC) supports the best scientific research to improve human health, with work ranging from molecular level science to public health medicine. MRC plays a key role in funding underpinning research which may not be attributable to a specific disease but will benefit medical research more generally. As part of this, UKRI funds research on immunology which is relevant to all of these diseases and will not be categorised per disease.

UKRI did not commit any funding specifically for fibromyalgia research in 2023 and 2024 to date. NIHR has not allocated any funds concerning fibromyalgia disease during F/Y 2023-24.

===
I think fibromyalgia is an example of what can happen if an illness community doesn't try to raise money privately. It is widely accepted that fibromyalgia affects a lot of people (probably 1 million+ in the UK alone).
But without private money there is unlikely to be a vibrant biomedical research community producing biomedical studies and submitting grant applications for biomedical grants.