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Evidence of how ME/CFS can be disappeared. UK : South Coast fatigue service'

https://www.southcoastfatigue.co.uk/about/ It's all about return to work. I could hardly find a mention of ME/CFS, CFS/ME or even CFS anywhere on the site. I only found this tucked away at the end: The disappearance of ME/CFS has almost been achieved here. Just a single mention in order...

Nice write up thanks Dave. There's certainly much to be done there. I wonder who is on that 'specific working group'.

Can someone make sure the website is archived?

Such a good question to investigate.

"virtual rehabilitation" :rofl: Reminds me of "recovery" achieved by reframing expectations

I'm not sure what you mean by 'illness process'. I interpret that as meaning severity, symptoms and e.g. eventual outcome (recovery, worsening) rather than risk factors for onset. The paper has already noted the 'notable female preponderance'. ref 2 is the Bakken Twin Peaks paper, I don't think...

Thank you Chris, @MelbME, and team. Great to see this. I thought this study was well underway? The good day, bad day study in adolescents? Is this just the delay in getting the protocol through the publishing process? I like the description of ME/CFS in this paper, better than what was used...

June 2022

https://www.northerncarealliance.nhs.uk/our-services/me-cfs-management-programme/introduction Awful, and an illustration of how the word 'complex' is used to mean a combination of physical and psychological factors. I could go on, it's all thoroughly dreadful. Someone needs to tell them...

Yes. Also, the UK patient charities could be loudly and bluntly be saying, "look at the waste of money. These services are achieving nothing, in fact they are probably achieving net harm." But they don't, presumably believing that the services might magically become useful one day. In fact...

It's interesting that Nath was feeling so strongly about this back in 2022, he was so convinced of a pathology, and seems to have maintained his views on this up till now too. And that he is quite clear that there are strong overlaps between Long Covid and ME/CFS and chronic Lyme and GWI. And...

And this is in a country that is so wealthy. It could ensure that all of its citizens have a reasonable quality of life. It absolutely could be resourcing the system so people are assessed quickly, if the decision-makers wanted to. It certainly should be looking after the people who put...

Thanks for sharing that @Yann04, things sound terrible. It's amazing that even a nurse who could demonstrate that she got Covid-19 relatively early on at work has no way of getting financial support. Contrast that with the benefits available to Swiss soldiers incapacitated at work:

Here's the thread for the guideline process: Australia: National Health and Medical Research Council (NHMRC): Development of ME/CFS guidelines

It's an interesting idea. It's a bit hard to square with people getting ME/CFS on their second or third SARS-CoV-2 infections though - there have been reports of that. There's even been the suggestion that the risk of Long Covid following repeat infections isn't markedly different. But, the...

Interesting videos, thanks @Dakota15. I note that there's not a whiff of BPS theories, nothing about effort preference or a need for behavioural modifications in relation to Long Covid, and Dr Nath notes the similarities with ME/CFS, chronic Lyme, and Gulf War Illness. Dr Nath comes across as...

There's mention of Recover VITAL, a trial of paxlovid and ritonvair. It's an odd clinical design. Treatment 1 - 25 days of paxlovid Treatment 2 - 15 days of paxlovid and 10 days of ritonavir +placebo Treatment 3 - 25 days ritonavir +placebo There's no proper control. I think there will be...

Good to see some separation of symptom groups e.g. ME/CFS, Dysautonomia, Cardiopulmonary, Musculoskeletal... But the ME/CFS one is Fatigue and PEM and (dizziness or brain fog) Dizziness is not a synonym for orthostatic intolerance