Information and guidance from The ME Association on Post-Covid Fatigue, Post-Covid Syndromes, Long Covid and the overlaps with ME/CFS This is a new 40-page booklet covering all aspects of Long Covid & ME/CFS. It forms part of the range of FREE Covid Resources we have made available on the MEA website. Download: Long Covid & ME/CFS: Information & Management | May 2021 [Link to web page with the introduction only, https://meassociation.org.uk/2021/0...nformation-management-by-dr-charles-shepherd/]
There is a small omission in the heading on page 13: "What are the possible causes (OF) Post-Viral Fatigue and Post-Covid Fatigue?" Also on p. 14 'highjacks' is used instead of 'hijacks'.
Now that you've put his name in, he should see it. Thanks! I've just been reading further and noticed that he's said on p. 21 "What has been term the systemic COVID-19 syndrome..." instead of 'termed'.
I have skimmed the document and generally think it looks pretty good. The section on energy management seems mostly OK, but I don't understand why this is included: Surely the point of pacing is that if you manage to reach a stable level of symptoms and activity without PEM, then you stick with that and don't try to 'push the envelope' - unless and until your symptoms improve sufficiently that you no longer feel you need to be so strict. Then you will naturally start increasing because you are feeling better. This sentence I have quoted seems more like 'pacing up', and can end up with push crash cycles.
I like that on page 20 Charles Shepherd says depression and anxiety are not part of post-viral syndromes. I bet the BPS brigade will be angry at reading that.
I hope it's OK to keep posting the small errors in the document here? On page 22 it says "The situation in relation to a Long covid syndromes..." The next sentence has a spelling error: "asessment". On p. 24 there appears to be a full stop instead of a comma: "At this stage." On p. 25 should "up to 7 hours sold" be "up to 7 hours solid"? On p. 28 is repetition: "Your GP can you refer you..." That's me done for now!
"7. In cases where symptoms have persisted for more than three months, and are consistent with those of ME/CFS, a diagnosis of Long or Post-covid ME/CFS should be considered. The diagnosis should be confirmed through the process of a careful clinical assessment". "Long Covid and ME/CFS Where post-covid syndrome symptoms have persisted for more than three or four months, and the symptoms are more consistent with ME/CFS symptomatology, and there are no significant COVID-19 related symptoms and no evidence of lung or heart damage, a diagnosis of a post-covid ME/CFS may be more appropriate". "PVFS and possible progression to ME/CFS Many cases of PVFS slowly resolve and people return to normal health. However, if PVFS symptoms persist for more than two to three months, and continue to cause a significant degree of functional impairment that prevents a return to education, employment or other key activities, a diagnosis of ME/CFS should be considered" Why is he shortening the timeline for an ME dx? What is Post-Covid ME/CFS? Is this a new term now? I had a viral infection and was told by an endocrinologist (after a thyroid scan) that I could feel ill for at least 10 months, this happened to her sister-in-law who eventually recovered. What are 'consistent symptoms' of ME? We're all different.
I would say having an adverse reaction to exercise or exertion is the hallmark symptom of ME. People with post viral fatigue should not be labelled as having ME, it dilutes the definition and causes harmful misunderstanding for genuine ME patients.
