Discussion in 'Long Covid research' started by obeat, Aug 12, 2020.
The profound and prolonged nature of fatigue in some post-acute covid-19 patients shares features with chronic fatigue syndrome described after other serious infections including SARS, MERS, and community acquired pneumonia.19202244 We found no published research evidence on the efficacy of either pharmacological or non-pharmacological interventions on fatigue after covid-19. Patient resources on fatigue management45 and guidance for clinicians on return to exercise43 and graded return to performance for athletes (box 4) 46 in covid-19 are currently all based on indirect evidence.
I like that they recommend pacing and emphasise that graded increase of exercise should be done only if tolerated. Also nice to see recommendations of patient peer support groups.
Patients were involved in reviewing this prior to publication. One of them was Paul Garner - I don't recognise any of the other names - he may well be reponsible for the bolding of "if tolerated".
That is a critical qualifier. It makes it symptom driven, which is pacing not GET.
This needed an explanation of PEM.
Without it, there is the risk of symptoms being attributred to deconditioning when they have nothing to do with it.
Agreed but it’s not a bad start and hopefully they could be persuaded to revise it with information about PEM as patients begin to register that the time frame for any anticipated recovery is stretching and get a better understanding of what PEM is and how it affects them in practice.
I don't understand this. How can someone whose covid-19 was managed in the community have a persistent abnormal chest x-ray if the same article recommends chest x-ray only at 12 weeks?
And "subsequent early referral to pulmonary rehabilitation probably aids recovery"? Obviously my definition of the word "early" is substantially different to that of the author.
Benefits of peer support group membership was also mentioned in the June 2020 document:
After-care needs of inpatients recovering from COVID-19
But Chalder, Sharpe, Moss-Morris et al promulgate that for ME and CFS patients, membership of peer support groups associated with poor outcome:
I'm really hoping this is the final death knell for GET. I know it's not a NICE publication, but it's from an influential journal; it's quite hard to see how NICE could continue recommending exercise-based 'therapy' in the face of publications like this.
Though this group have real problems understanding that association is not causality and invariably decide on a direction of causality that suits their own preconceptions regardless of other evidence.
Are there other disease/illness groups where the main clinician/researchers are so negative about peer-support groups and relevant charities?
Their frequent references, in the past, to highly organised and "politicised" patient organisations that operate as "powerful lobby groups" used to amuse me.
Be fair, one at least was quite powerful in terms of carrying the message to the patients.
I thought this was an interesting twitter response.
I am glad they are listening to those who know (patient peer reviewers) what they're talking about!
A shame they needed to but yes.
I am surprised there's not more discussion about dysautonomia in long-COVID. (Haven't tracked this so is this generally the case or is there acknowledgement of it?)
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