NICE guideline on Long Covid fails to acknowledge important clinical and pathological overlaps with ME/CFS
Dear Editor
Sivan and Taylor raise some valid concerns about lack of detail in the rapid NICE guideline on post-covid syndrome (1).
Exercise testing in people who may have undetected cardiac pathology clearly carries a risk. Inappropriate exercise testing or treatment is also very likely to cause a significant degree of symptom exacerbation in a post-viral syndrome such as this. NICE has already cautioned against the use of graded exercise therapy in long covid (2) and it is surprising to find no such caution in this guideline.
Having spent over 30 years helping people with post-viral fatigue syndromes, and post infectious ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), I was disappointed to find no recognition of the important clinical and pathological overlaps between long covid and ME/CFS, along with a failure to make use of the detailed guidance on energy and activity management in the draft of the new NICE guideline on ME/CFS (3).
A wide range of viral infections, including coronavirus infections, are capable of triggering a post viral fatigue syndrome and subsequent ME/CFS. In the case of SARS (severe acute respiratory syndrome) one cohort of health workers in the 2003 Toronto epidemic went on to develop an ME/CFS like illness (4). In addition to the possibility of post infection central nervous system pathology in long covid, another potentially important pathological overlap with ME/CFS is the cytokine storm that occurs in COVID-19 (5). This observation could link to the on-going immune system activation found in ME/CFS (5).
Many people with long covid have fluctuating clusters of symptoms including shortness of breath, palpitations on exertion, fevers, anosmia, parosmia, ageusia/loss of taste, abdominal pain and diarrhoea, and skin rashes that clearly relate to specific end organ effects on the cardiorespiratory, liver, renal and gastrointestinal function at the time of the original infection. A significant proportion also have clusters of symptoms including activity induced fatigue, myalgia, cognitive dysfunction, dysautonomia and orthostatic intolerance (7), disturbed thermoregulation, and post-exertional malaise/symptom exacerbation that are consistent with a post viral fatigue syndrome (PVFS) or even ME/CFS. Many have a mixture of both.
In addition to listening to, believing and supporting people with long covid, health professionals should therefore be providing guidance on all aspects of symptom management - much of which will involve self management. And in some cases this could be delivered in primary care with the help of properly trained community physiotherapists and occupational therapists.
The ME Association is providing regularly updated and comprehensive information on the management of post covid fatigue and all the other common symptoms of long covid that overlap with ME/CFS (8). However, the NICE guideline contains no specific guidance on the management of any of the common symptoms of long covid. This is a serious omission which requires urgent attention. The practical management of long covid cannot be left to charities and self help support groups.
Dr Charles Shepherd
Hon Medical Adviser, ME Association
REFERENCES
1 Sivan M and Taylor S. Research must be done urgently to fill the many gaps in this new “living guideline”
. BMJ 2020; 371
doi: https://doi.org/10.1136/bmj.m4938
4 Moldofsky H and Patcai J. Chronic widespread musculoskeletal pain, fatigue, depression and disordered sleep in chronic post-SARS syndrome; a case-controlled study. BMC Neurology 2011; 11: 37.
doi: 10.1186/1471-2377-11-37
5 Hojyo S, Uchida M, Tanake K et al. How COVID-19 induces cytokine storm with high mortality. Inflammation and regeneration. 2020; 40: 37
doi: 10.1186/s41232-020-00146-3
6 Strawbridge R, Sartor M-L, Scott R et al. Inflammatory Proteins are altered in chronic fatigue syndrome - A systematic review and meta-analysis. Neuroscience, Biobehavior Review, 2019
Ddoi: 10.1016/j.neubiorev.2019.08.011
7 Dani M, Dirksen A, Taraborelli P et al. Autonomic dysfunction in ‘long COVID’: rationale, physiology and management strategies. Clinical Medicine, 2020, 21
doi:10.7861/clinmed.2020-0896
Rapid Response:
NICE guideline on Long Covid fails to acknowledge important clinical and pathological overlaps with ME/CFS
Dear Editor
Sivan and Taylor raise some valid concerns about lack of detail in the rapid NICE guideline on post-covid syndrome (1).
Exercise testing in people who may have undetected cardiac pathology clearly carries a risk. Inappropriate exercise testing or treatment is also very likely to cause a significant degree of symptom exacerbation in a post-viral syndrome such as this. NICE has already cautioned against the use of graded exercise therapy in long covid (2) and it is surprising to find no such caution in this guideline.
Having spent over 30 years helping people with post-viral fatigue syndromes, and post infectious ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), I was disappointed to find no recognition of the important clinical and pathological overlaps between long covid and ME/CFS, along with a failure to make use of the detailed guidance on energy and activity management in the draft of the new NICE guideline on ME/CFS (3).
A wide range of viral infections, including coronavirus infections, are capable of triggering a post viral fatigue syndrome and subsequent ME/CFS. In the case of SARS (severe acute respiratory syndrome) one cohort of health workers in the 2003 Toronto epidemic went on to develop an ME/CFS like illness (4). In addition to the possibility of post infection central nervous system pathology in long covid, another potentially important pathological overlap with ME/CFS is the cytokine storm that occurs in COVID-19 (5). This observation could link to the on-going immune system activation found in ME/CFS (5).
Many people with long covid have fluctuating clusters of symptoms including shortness of breath, palpitations on exertion, fevers, anosmia, parosmia, ageusia/loss of taste, abdominal pain and diarrhoea, and skin rashes that clearly relate to specific end organ effects on the cardiorespiratory, liver, renal and gastrointestinal function at the time of the original infection. A significant proportion also have clusters of symptoms including activity induced fatigue, myalgia, cognitive dysfunction, dysautonomia and orthostatic intolerance (7), disturbed thermoregulation, and post-exertional malaise/symptom exacerbation that are consistent with a post viral fatigue syndrome (PVFS) or even ME/CFS. Many have a mixture of both.
In addition to listening to, believing and supporting people with long covid, health professionals should therefore be providing guidance on all aspects of symptom management - much of which will involve self management. And in some cases this could be delivered in primary care with the help of properly trained community physiotherapists and occupational therapists.
The ME Association is providing regularly updated and comprehensive information on the management of post covid fatigue and all the other common symptoms of long covid that overlap with ME/CFS (8). However, the NICE guideline contains no specific guidance on the management of any of the common symptoms of long covid. This is a serious omission which requires urgent attention. The practical management of long covid cannot be left to charities and self help support groups.
Dr Charles Shepherd
Hon Medical Adviser, ME Association
REFERENCES
1 Sivan M and Taylor S. Research must be done urgently to fill the many gaps in this new “living guideline”
. BMJ 2020; 371
doi: https://doi.org/10.1136/bmj.m4938
2 NICE. Statement about graded exercise therapy in the contact of COVID-19. July 2020. https://www.nice.org.uk/guidance/gid-ng10091/documents/statement
3 NICE. Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management. November 2020 https://www.nice.org.uk/guidance/indevelopment/gid-ng10091
4 Moldofsky H and Patcai J. Chronic widespread musculoskeletal pain, fatigue, depression and disordered sleep in chronic post-SARS syndrome; a case-controlled study. BMC Neurology 2011; 11: 37.
doi: 10.1186/1471-2377-11-37
5 Hojyo S, Uchida M, Tanake K et al. How COVID-19 induces cytokine storm with high mortality. Inflammation and regeneration. 2020; 40: 37
doi: 10.1186/s41232-020-00146-3
6 Strawbridge R, Sartor M-L, Scott R et al. Inflammatory Proteins are altered in chronic fatigue syndrome - A systematic review and meta-analysis. Neuroscience, Biobehavior Review, 2019
Ddoi: 10.1016/j.neubiorev.2019.08.011
7 Dani M, Dirksen A, Taraborelli P et al. Autonomic dysfunction in ‘long COVID’: rationale, physiology and management strategies. Clinical Medicine, 2020, 21
doi:10.7861/clinmed.2020-0896
8 Shepherd CB. Post-Covid 19 Fatigue, Post/Long Covid-19 Syndromes and Post-Covid ME/CFS. ME Association, November 2019:
https://meassociation.org.uk/wp-content/uploads/MEA-Covid-19-MECFS-Post-...
ENDS
Competing interests: No competing interests