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Fran @hashtagfran.bsky.social · 3d

That sounds like a torture session for someone with ME! Sadly there seems to be no sensible support or treatment other than advice about pacing, once they have ruled other conditions out.
Wish you well ( as well as possible).

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Fran @hashtagfran.bsky.social · 3d

There is a real, potential problem here because ME and LC are so poorly understood (and variable in severity). There are no clear tests proving the condition which leaves patients vulnerable when speaking to agencies. I have LC but am retired. If I was younger I would not be able to work.

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Fran @hashtagfran.bsky.social · 7d

@bertsbooks.bsky.social get lots of ideas for books to read.

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Fran @hashtagfran.bsky.social · 7d

Yes, that is the point. People rarely think that they personally will have to pay for redistribution. But sadly, rising prices will lead to a fall in demand for meals out ( especially as these are treats not necessities). This will mean less jobs - so only a redistribution to those able to find work

Fran @hashtagfran.bsky.social · 10d

I have had LC for over 3 years and this doesn't surprise me at all. The only reason that LC is on my health record is because I inform the surgery when it drops off. I attended a LC clinic which was a one stop shop and no help. It surprised me there was no follow up or monitoring.

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Fran @hashtagfran.bsky.social · 12d

Less than Angels by Barbara Pym , love all her books

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Fran @hashtagfran.bsky.social · 18d

I think having a bit of independence would be wonderful, I really can't decide whether a scooter or chair would be best.

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Fran @hashtagfran.bsky.social · 18d

I will speak to the charity, as well

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Fran @hashtagfran.bsky.social · 18d

That was one I was looking at online. Are you reasonably pleased with it

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Fran @hashtagfran.bsky.social · 18d

Thank you, very helpful!

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Fran @hashtagfran.bsky.social · 19d

Hi Sarah, hope all is going well and you are enjoying being back at uni.
Can I ask what make of wheelchair you have, and how you find it? Also is it heavy to put in the car?

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Reposted by Fran

Long Covid Support @longcovidsupport.bsky.social · 28d

✨ Fireside Chat Ep 24 ✨
📅 Wed 17 Sept | 18:00 BST | YouTube Live

'Muscle & Movement: Rethinking Long Covid & ME/CFS'

Dr Rob Wust and @binitakane.bsky.social on why PEM is nothing like deconditioning and what research reveals about muscle changes in these conditons.

www.youtube.com/watch?v=8i4i...

Fireside Chat Series | Episode 24 | #Mitochondria & #Muscle: Rethinking Long COVID and #ME/CFS

YouTube video by The Long Covid Clinic: What You CAN Do

www.youtube.com

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Fran @hashtagfran.bsky.social · 28d

But I am happy you have improved enough to progress with your course. It is so much harder for young people with LC/ ME, you have hopes and dreams for your future.
Did you find the electric wheelchair helps?
Good luck with the course

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Fran @hashtagfran.bsky.social · 28d

I closed my twitter account as it just seemed so depressing. I don't come here much, but kept as a way to stay in touch with LC stuff.
I am the same, it's difficult as you know. I have accepted this is how it is for me and just take one day at a time.

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Fran @hashtagfran.bsky.social · Sep 9

Good luck Sarah, that's lovely news. Pleased also that this means that there has been some improvement in your health

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Fran @hashtagfran.bsky.social · Sep 8

💯 correlation is not causation.

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Fran @hashtagfran.bsky.social · Sep 7

Yes..And with ME and LC pacing is often the only tool to try and deal with the symptoms. And sometimes we are just trying to join in life a little bit - not going overboard. Such a difficult path to navigate

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Fran @hashtagfran.bsky.social · Sep 6

This is shocking.

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Fran @hashtagfran.bsky.social · Aug 24

It was indeed. An amazing woman. I recall people talking about her, and the agency she set up, when I worked for ICL in the late 1970s.

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Fran @hashtagfran.bsky.social · Aug 20

The Long COVID Clinic I attended a couple of years ago wasn't fit for purpose. It was a one stop shop, no follow up no monitoring. Sympathetic staff just wrote what I said. That was it. I think monitoring, at least, would be good to see longer term outcomes. I know I have deteriorated .

Fran @hashtagfran.bsky.social · Dec 26

Hope you had a lovely Christmas Day and are managing to enjoy the festive season

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Reposted by Fran

Prof Danny Altmann @daltmann.bsky.social · Dec 17

Unsure of the impact on overall autoimmune prevalence, but we know from national EHCR that #Covid19 increases risk of RA, SLE, vasculitis, IBD, T1D by 2-3x

Stephen MIA @stephenmia.bsky.social · Dec 16

It would be interesting to see how the pandemic has impacted that number.

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Reposted by Fran

Magdalena Skipper @magdalenaskipper.bsky.social · Dec 17

Thirty years after the sequencing of the BRCA1 cancer-associated gene, access to genetic tests and awareness about its risks are still too limited - Why the genetic-testing revolution left some people behind
🧪
@natureportfolio.bsky.social

www.nature.com/articles/d41...

Why the genetic-testing revolution left some people behind — and what to do about it

Thirty years after the sequencing of the BRCA1 cancer-associated gene, access to genetic tests and awareness about its risks are still too limited.

www.nature.com

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Reposted by Fran

Jo Summers (@joissummer from Twitter) @joissummers.bsky.social · Dec 5

Please consider signing the petition to help reduce additional strain. Staff and patients deserve better.

petition.parliament.uk/petitions/70...

Petition: Introduce new air quality and PPE rules for health and social care settings

We want the Government to set new rules on air quality and infection control in health and social care settings, to prevent and control airborne infections, with new ventilation and filtration require...

petition.parliament.uk

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Fran @hashtagfran.bsky.social · Nov 26

You would. But looking at infection control in hospitals and GP surgeries I am not surprised.

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