https://www.bacme.info/civicrm/event/info?id=11
The aims of this event are:
To share experiences of the impact of Long-COVID on specialist CFS/ME services, professionals & patients
To receive updates on national and local progress on the integration of specialist fatigue management pathways...
This document has been discussed on Twitter over the weekend. I think it might be worthwhile comparing versions I and II, so here is a comparison of the two documents (if the link works as expected): https://draftable.com/compare/UgEqXBfVchrM
That's not what's happening. Dr Strain said he'd like to trial monthly vaccines for long Covid, based on the evidence of some patients improving after jabs.
They never stop f*cking around with the NHS, do they? All the signs are this is not widely supported within the NHS, and that it removes barriers to NHS privatisation.
Merged thread
Does anyone have the main Benefits & Work PIP guide document that they can share with me? My membership expired in April and I'd like to get hold of this guide.
Many thanks!
Ok, so it turns out the Protocol was published on the JLA website, but it’s hidden in the depths of the website. The final Protocol is here: https://www.jla.nihr.ac.uk/documents/me-cfs-psp-protocol/26824
I’ve asked that this and other key documents are added to the ME-PSP website.
Hi @MEMarge @Amw66 (I hope I'm tagging the right people). This page (https://www.jla.nihr.ac.uk/about-the-james-lind-alliance/templates-and-useful-documents.htm) states that the PSP Protocol should be published on the JLA website once it is finalised by the Steering Group. I don't think it has...
I had no worsening of symptoms in the days following my vaccines (Pfizer), but I've had a really bad few months, and I'm trying to ascertain whether the vaccines have played a role. My stamina / endurance has reduced from already low levels, less energy overall, and increase in muscle soreness...
I watched yesterday, and thought it was good. Too many assertions about etiology and following particular hypotheses. And I did not understand the German doctor who used length of crash to distinguish between PVFS and ME/CFS. I think she just made that up.
Yep. Also, the clinics—as far as I'm aware—lack any sort of central (national) organisation. The NICE guideline and BACME are the main common threads. I would be interested to know whether this sort of feedback exercise is mandated within the NHS for any new/revised NICE guideline, or whether...
I saw this on Reddit. Someone had posted saying they received a letter from their ME/CFS clinic, were dreading what it might be, but it turned out to be an invitation to be part of a patient focus group to provide feedback on the new NICE guideline—which they were happy about.
I asked the...
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