Dear Editor, I read the article Returning to physical activity after covid-19 with extreme concern.
I believe it is possible that following the recommendations in the article may disable a substantial fraction of patients for life.
I say this as the article does not mention the nearly identical symptom spectrum and symptom spectrum trajectory between those with ME/CFS and those with longcovid. https://www.medrxiv.org/content/10.1101/2020.12.24.20248802v1 'Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact'.
Many with severe longcovid are now meeting the diagnostic criteria in the current NICE guidelines for ME/CFS.
The approach in the paper is basically 'graduated exercise' that assumes there are no possible physical outcomes of exercise other than getting healthier once thrombotic or other severe events have been taken into account. The draft guidance for ME/CFS from NICE finds that it does not help patients. ( https://www.bmj.com/content/371/bmj.m4356 NICE backtracks on graded exercise therapy and CBT in draft revision to CFS guidance)
I note that 'psychiatric' symptoms are mentioned in the paper.
These are not as proven as the authors hope.
Consider https://pubmed.ncbi.nlm.nih.gov/32738287/ 'Anxiety and depression in COVID-19 survivors: Role of inflammatory and clinical predictors' that they cite. This reads ' A significant proportion of patients self-rated in the psychopathological range: 28% for PTSD, 31% for depression, 42% for anxiety, 20% for OC symptoms, and 40% for insomnia.'.
However, if you dig into the actual scales used, all of these are hugely inappropriate for measuring fatigued and unwell patients. (see the characterising longcovid paper for a list)
They All conflate 'can't due to MH' with 'can't due to physical health'. At best MH scales used need careful per-question analysis to see appropriateness and working out a baseline score appropriate for a patients physical condition.
Not doing this for patients that may be severely fatigued, with 'brain fog' , facing a disease of an uncertain prognosis is dangerous.
I do not use the term dangerous, or disabling for life lightly.
I have read way, way too many papers on the biochemistry and symptoms of ME/CFS (did you know for example over half have cardiac abnormalities? https://www.jstage.jst.go.jp/article/internalmedicine/48/21/48_21_1849/_... ) to know that the core pathology leading to the symptoms is unknown.
The core pathology leading to the symptoms of longcovid is also unknown, and yet the symptom spectrum and progression is nearly identical in a subset of patients.
I should note what some may view as a 'conflict of interest'.
I followed advice (and my parents too) some decades ago as a small boy following a trivial virus that reads almost identically to the above in the paper.
That small boy was disabled for life, and is now doubtful that he will be cured by retirement, given the 15 years from core pathology to drug development, and the unknown core pathology.
Mr Ian Stirling.
ps. I had hoped at this point to have more titles, but education was one thing stolen from me.
Rapid Response:
Re: Returning to physical activity after covid-19
Dear Editor, I read the article Returning to physical activity after covid-19 with extreme concern.
I believe it is possible that following the recommendations in the article may disable a substantial fraction of patients for life.
I say this as the article does not mention the nearly identical symptom spectrum and symptom spectrum trajectory between those with ME/CFS and those with longcovid.
https://www.medrxiv.org/content/10.1101/2020.12.24.20248802v1 'Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact'.
Many with severe longcovid are now meeting the diagnostic criteria in the current NICE guidelines for ME/CFS.
The approach in the paper is basically 'graduated exercise' that assumes there are no possible physical outcomes of exercise other than getting healthier once thrombotic or other severe events have been taken into account. The draft guidance for ME/CFS from NICE finds that it does not help patients. ( https://www.bmj.com/content/371/bmj.m4356 NICE backtracks on graded exercise therapy and CBT in draft revision to CFS guidance)
I note that 'psychiatric' symptoms are mentioned in the paper.
These are not as proven as the authors hope.
Consider https://pubmed.ncbi.nlm.nih.gov/32738287/ 'Anxiety and depression in COVID-19 survivors: Role of inflammatory and clinical predictors' that they cite. This reads ' A significant proportion of patients self-rated in the psychopathological range: 28% for PTSD, 31% for depression, 42% for anxiety, 20% for OC symptoms, and 40% for insomnia.'.
However, if you dig into the actual scales used, all of these are hugely inappropriate for measuring fatigued and unwell patients. (see the characterising longcovid paper for a list)
They All conflate 'can't due to MH' with 'can't due to physical health'. At best MH scales used need careful per-question analysis to see appropriateness and working out a baseline score appropriate for a patients physical condition.
Not doing this for patients that may be severely fatigued, with 'brain fog' , facing a disease of an uncertain prognosis is dangerous.
I do not use the term dangerous, or disabling for life lightly.
I have read way, way too many papers on the biochemistry and symptoms of ME/CFS (did you know for example over half have cardiac abnormalities? https://www.jstage.jst.go.jp/article/internalmedicine/48/21/48_21_1849/_... ) to know that the core pathology leading to the symptoms is unknown.
The core pathology leading to the symptoms of longcovid is also unknown, and yet the symptom spectrum and progression is nearly identical in a subset of patients.
I should note what some may view as a 'conflict of interest'.
I followed advice (and my parents too) some decades ago as a small boy following a trivial virus that reads almost identically to the above in the paper.
That small boy was disabled for life, and is now doubtful that he will be cured by retirement, given the 15 years from core pathology to drug development, and the unknown core pathology.
Mr Ian Stirling.
ps. I had hoped at this point to have more titles, but education was one thing stolen from me.
Competing interests: No competing interests