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Email sent to Russell today, so the MEA can add Sheffield onto their watch list.

I have emailed and asked for it to be deleted as it is a pre NG206 document.

I have emailed a link to this thread to a trustee at Sheffield ME & Fibromyalgia Group, to bring this to their attention. I am aware that they are already working with Healthwatch and their ICB to update services to NG206. https://www.sheffieldmegroup.co.uk/speakup2022

“Oonagh Cousins explains how a return to elite rowing since #LongCovid unfortunately hasn’t worked out” Also very interesting flow chart/ article on a suggested protocol of tests for Elite Athletes here:

Disability News Service article dd 30.3.2023 covers many excellent points. https://www.disabilitynewsservice.com/six-disability-campaigners-tell-mps-governments-benefit-reforms-are-not-fit-for-purpose/ It covers the evidence given to Women & Equalities Committee on 29.3.23...

I’ve often thought exactly the same @NelliePledge when I’ve seen those adverts. Not cancer worries, but heart - I’ve had increasing concerns over a racing heart beat on exertion (or even sitting quietly on the sofa with my legs up). Following 2 years with a Fitbit to “prove” the phenomenon, I...

I then wondered whether foods in French and German share the same gender, but, of course, you’d also have to factor in the foods in German which are neuter too. Then also add in all the other languages that use masculine/feminine :nailbiting: Oh dear, failed at first my first, easiest, example...

Nothing to help you, sorry. Just solidarity and :hug::hug::hug: for you both

Thanks @Adam pwme, I read your post in time to watch Indie Sage on Friday. It was a very interesting watch. https://www.youtube.com/live/d8zwQ0-uwvE?feature=share Meanwhile, pwLC are now going round in circles - ‘off label’ medications were suggested in that Nature article, yet anecdotally, I...

Caroline confirmed that the staff at the Biobank are very aware of the forum. Hopefully we can help the Biobank more, when the Research Asst has been appointed ? :emoji_fingers_crossed:

As a former participant, I will dash off an email now to the research nurse to mention SfME as an excellent resource/access to patient groups. ETA Email sent!

Also worth bearing in mind that every Constituency office should have a Welfare Advisor who is experienced in dealing with benefits (etc) issues. I echo @Kitty ’s experience that there are decent constituency MPs/staff (of all political parties) who will work hard to support their community.

Was this able to go ahead @obeat please? It’s not appeared on the webinar list yet https://view.pagetiger.com/me-fibro-webinars/1

I wrote a tweet to share, if you are on twitter and want something fast and easy to RT? In our area, a small group of us have engaged our MP since 2018 and one of our first asks was for ringfenced funding into biomedical research (not our preferred wording)...

I remember reading of Bob’s experiences at the time. Still furious, on his behalf, for what he was put through. Yet here we are again, years later, with 4 known cases (there will be many more), on Social Media, in England, where PwME are disbelieved, denigrated & still suffering :banghead:

Actually it is another page https://www.england.nhs.uk/ourwork/clinical-policy/ltc/our-work-on-long-term-conditions/ My ‘roundabout’ journey requesting that the Neurological conditions hyperlink be mended - it goes to a Page Not Found (404) -remains ongoing. This started 27 January and I...

The above page in in the sights of others. Sally from ME Foggy Dog has been checking page amendments as they go and this ‘treatment’ of CBT for ME/CFS is high on her list.

Finland 16 March 2023

Have you read any of Dr Mike Scott’s (CBT Watch) articles? http://www.cbtwatch.com/the-re-branding-of-iapt-never-mind-the-quality-feel-the-width/ He has also co produced some work to support people with ME/CFS in the past.

@Jonathan Edwards Nikki has asked me to pass on her contact details to discuss please - I will DM you