NICE guideline on long covid
BMJ 2020; 371 doi: https://doi.org/10.1136/bmj.m4938 (Published 23 December 2020) Cite this as: BMJ 2020;371:m4938Read our latest coverage of the coronavirus outbreak
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Dear Editor
It is absurd that NICE wants doctors to "explain to people that it is not known if over-the-counter vitamins and supplements are helpful, harmful or have no effect in the treatment of new or ongoing symptoms of COVID 19".1
Does that mean none of the NICE experts have experience of assessing and correcting the very common deficiencies of essential nutrients especially, in this case, of Vitamins D and C?
Dr David Grimes emphasised in his Blog that 19 world-wide studies have demonstrated that low blood levels of Vitamin D are associated with severe or fatal Covid-19. The latest International studies indicate that a blood level of more than 30ng/ml (75nmol/L) is a level that indicates protection against serious or fatal Covid-19 infection. A target level of 40ng/ml (100nmol/L) would appear to be appropriate, and to achieve this vitamin D in a daily supplement of 4,000 units is effective, perfectly safe, and costs about £12 per year.
Magnesium is needed in the metabolism of Vitamin D and for normal functioning of the myocardium and skeletal muscles. However, low red blood cell levels of magnesium and low white cell zinc levels are also very common but such tests seem to be only available in private laboratories.
Simmons and Smith report the overwhelming evidence of the efficacy of an intravenous vitamin C protocol against coronavirus. They write that in spite of this accumulation of the evidence, the FDA, the CDC, and many respected members of the medical community inexplicably jeopardize their own credibility, apparently to save the irrelevant business model of the pharmaceutical industry.2
It seems that expensive drugs are preferred to cheap essential nutrients
1 NICE COVID-19 rapid guideline: managing the long-term effects of COVID-19
NICE guideline [NG188] Published date: 18 December 2020
https://www.nice.org.uk/guidance/ng188/chapter/4-Planning-care
2 Simmons WF, Smith RG. Vitamin C and coronavirus: not a vaccine; just a humble cure. Orthomolecular Medicine News Service, May 4, 2020.
Competing interests: No competing interests
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
Re: NICE guideline on long covid
Dear Editor,
When thousands have/are suffering from 'Long Covid ', the world over with multiple symptoms that range from tolerable but persistent to most distressing and agonising, one fact emerges with clarity - understanding is presently incomplete and demands study(ies) that shed more light on mechanisms to explain the condition and offer probable therapies that turn more specific with better results/relief.
Yet the Guidelines are a commendable effort to begin and bank on as a benchmark that would evolve as the body of knowledge expands and help revision(s) with new and better measures. Currently many patients with long Covid tend to be treated symptomatically/empirically with response less known and predictable.
Dr Murar E Yeolekar, Mumbai.
Competing interests: No competing interests