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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."
 
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MeSci said:
Merged thread

'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."
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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).
 
Eleanor said:
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).
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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/
 
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?
 
Jonathan Edwards said:
I wonder what fatigue management is?
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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.
 
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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/

https://twitter.com/user/status/1857034585290191170
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Thread on the study here: Trajectories of functional limitations, health-related quality of life and societal costs in individuals with long COVID, 2024, Wang+
 
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:confused:

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.
 
An NHS GP has urged people to be vigilant about their symptoms if they're still feeling fatigued despite making lifestyle changes. Dr SK, also known as @yourdailydoc on TikTok, emphasised that constant tiredness could be a sign of an underlying health issue.

She said: "Feeling tired all the time is your body's way of telling you there is something going on. I'm a UK-based GP and these are the common causes that I come across. The obvious causes are lifestyle factors which you can recognise yourself". The doctor listed lack of sleep, sedentary lifestyle, dehydration, poor diet, and excessive stress as potential culprits.

...
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...
Miranda Hart has opened up about her struggle with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome, after years of being misdiagnosed. The star of the hit BBC sitcom 'Miranda' revealed that she had been living with undiagnosed Lyme disease since her teenage years, reports the Express.

After her show finished in 2015, her condition deteriorated into ME. Now at 51, Miranda shared how she suffered from extreme fatigue, joint pain, and memory issues, yet faced "decades of misdiagnosis".
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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.
 
DWP spent £50,000 trying to stop release of review into disabled man’s death — The Guardian
More than £50,000 of taxpayers’ money was spent on lawyers to try to prevent the release of a safeguarding review ordered after a disabled man starved to death in his own home.

The costs were part of a bill of nearly £1m spent under the last government to prevent the release of various documents under the Freedom of Information (FoI) Act.

It included spending by the Home Office of £30,000 to block a request by the Guardian for the total cost to the public of protecting the royal family.

The figures were revealed after requests by the Democracy for Sale newsletter, which sought details of spending under the last government in attempts to prevent the release of information.

Some of the spending that was uncovered related to an attempt by a campaigner at the Child Poverty Action Group charity to obtain the results of a review by the Department for Work and Pensions (DWP) into its safeguarding procedures.

Rest of Article
 
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Yann04 said:
DWP spent £50,000 trying to stop release of review into disabled man’s death — The Guardian
More than £50,000 of taxpayers’ money was spent on lawyers to try to prevent the release of a safeguarding review ordered after a disabled man starved to death in his own home.

The costs were part of a bill of nearly £1m spent under the last government to prevent the release of various documents under the Freedom of Information (FoI) Act.

It included spending by the Home Office of £30,000 to block a request by the Guardian for the total cost to the public of protecting the royal family.

The figures were revealed after requests by the Democracy for Sale newsletter, which sought details of spending under the last government in attempts to prevent the release of information.

Some of the spending that was uncovered related to an attempt by a campaigner at the Child Poverty Action Group charity to obtain the results of a review by the Department for Work and Pensions (DWP) into its safeguarding procedures.

Rest of Article
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Thanks for posting this. I didn't have a link to the parliament tv clip of the Debbie Abraham's question on Jodey Whiting suicide (2017) or Errol Graham starvation (2018).

Parliamentlive.tv - House of Commons
 
Dolphin said:
Musician with ME gives back to hospital where she was treated

https://www.bbc.com/news/articles/cqx81qw9x1vo

A new variation on the theme of someone claiming something helped them get better from ME and they now go on to make money by “selling” it to others.
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Yes, definitely a smart idea in an illness that commonly features sound intolerance. Brilliant!

I recently got back to being able to not just tolerate, but enjoy music. It's been a blessing, though I'm very far from being able to play anything. And I can only listen a few days per week, not for long. For years, I couldn't even process music. It sounded chaotic and jumbled, caused me pain. Then I was able to sort of listen to it, but couldn't separate the instruments from the whole. It was still very limited.

As my symptoms improved over time, especially sound intolerance, I was slowly able to listen to a bit, then a bit more over time. Still not a lot compared to normal. This 'envelope' doesn't grow because I listened to music, I was able to listen to music because it grew. They have it completely backwards. As is tradition.
 
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