Long covid: How to define it and how to manage it
BMJ 2020; 370 doi: https://doi.org/10.1136/bmj.m3489 (Published 07 September 2020) Cite this as: BMJ 2020;370:m3489Read our latest coverage of the coronavirus outbreak
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Dear Editor
‘Tired all the time’ (TATT) is a presentation frequently encountered in medicine, especially general practice. Management typically includes a battery of blood tests (‘tiredness screen’) including full blood count, thyroid function and haematinics.
Although tiredness can be a symptom of undifferentiated physical illness, many of the cases encountered in primary care are usually attributed to busy lifestyles and/or possible underlying mental health problems.
However, with the recognition of post-acute covid-19 syndrome (‘long covid’) (BMJ 2020;370:m3489) as a clinical entity, which can present with fatigue, there is a need to review our management of the tiredness presentation.
Given the fact that covid-19 can present in an asymptomatic manner, many new presentations of tiredness could in fact be due to ‘long covid’. As such there is a compelling argument for clinicians to consider adding covid-19 antibody testing when investigating tiredness. This may not only facilitate the diagnosis of this syndrome, but more importantly may also prevent labelling and misdiagnosis of patients as stressed and having mental health disorders.
Yours faithfully,
Dr. Milan Dagli, MPharm, MB ChB, nMRCGP
General practitioner, Middlesex
Competing interests: No competing interests
Dear Editor,
A reader has described his decade long history of disabling, non-specific symptoms. Despite referral “for every imaginable test“, there has been no pointer to any diagnosis, except the label of fibromyalgia, reached by exclusion. (1) He notes the similarity of his symptoms to those of Long Covid.
I hope that your reader, a retired electronics engineer, enjoys better understanding and control of his health in 2021. In particular, like many people whose disabling symptoms cause them as much exasperation as they cause bemusement and frustration to their clinicians, I hope that his exhaustive search for environmental and iatrogenic causes, will be rewarded.
The extended historical narrative relating to electromagnetic fields and their possible effects is as remarkable as it is mostly forgotten. The research and clinical findings, over many decades, are impressive, notwithstanding that in most western countries the possibility of EMF sensitivity is rarely included in differential diagnoses. Why is this so?
The subject has recently been reviewed in detail, with 150 pages of references and bibliography. (2)
1 https://www.bmj.com/content/370/bmj.m3489/rr-6
2 Arthur Firstenberg. The Invisible Rainbow. Chelsea Green Publishing, 2020.
Competing interests: No competing interests
Dear Editor
I am not a medical professional but I was very interested to view your webinar as I have been suffering from symptoms identical to those described by people diagnosed with Long Covid. I do not believe that Long Covid is confined to people who have been infected with Covid-19 but that Covid-19 has made them susceptible to a not uncommon chronic condition which is little understood by the medical profession. Although one of the panel members, Paul, referred to CFS I was surprised that no connection was made between Long Covid and fibromyalgia. I have been suffering from overwhelming fatigue, muscle and joint aches, breathlessness and brain fog for almost 10 years now, over which time I have gradually been getting worse, to point where I am now affected daily. In the last 2 years, I have had to give up all my recreational activities, kayaking, hiking, cycling and weekly volunteering activities with the RSPB. There was no obvious cause to the start of my illness, such as the after-effects of a virus, although I had been diagnosed with ulcerative colitis about 12 months prior. My GP has referred me for every imaginable test to reach a diagnosis but all results have proved normal, so she has eventually agreed that I am most probably suffering from fibromyalgia. I hope that medical researchers can widen their studies into Long Covid to include CFS and fibromyalgia which could very well be varying degrees of the same condition. I would be more than happy to take part in any studies or provide more information on my medical history, which could potentially help sufferers of this debilitating condition like myself.
Yours faithfully,
Geoff Coulson
Competing interests: No competing interests
Dear Editor
Many thanks for this excellent article. I myself, together with my wife and two neighbours were very ill in February with respiratory illness and fever, requiring outpatient care and both steroids and antibiotics and several weeks recovery.
Since we have been made aware that other contacts have had symptoms including what is now known as "covid toe". At the time tests were not available here in Edinburgh.
I now have regular recurrence of fever and cough (I have been therefore been tested 4 more times - negative result) and extreme fatigue of a kind I have not experienced before, together with odd skin rashes, bruises and nerve pain with muscle weakness.
As a trauma specialist psychotherapist I am extremely concerned about the long term mental health effect this kind of recovery process may trigger since it is highly debilitating. As a Fellow of the Royal Society of Public Health and an integrative style therapist I am very concerned about the issue of identifying and supporting so many potential people who like myself were ill before COVID tests were available.
If anyone wishes to network on mental health effects, or locally in Scotland, please contact me
Regards
Stuart Morgan-Ayrs BSc(Hons) BA(Hons) BA(Hons) MSc(Psy) D.Hy FRSSA FRSPH FNCP FICP FFHT
Competing interests: No competing interests
I maintain that the symptoms of COVID-19 are induced by the fear and anxiety and social isolation (lockdown) which results in 1) greater consumption of alcohol; 2) greater intake of snacks, carbohydrates and processed foods; 3) sugary foods; 4) increased sleeplessness, which results in greater consumption of caffeinated beverages (coffee, tea); 5) increased tobacco use, all of which are documented to impair thiamine (vitamin B1). This is the "high calorie malnutrition" Derrick Lonsdale MD speaks of. Diabetics are identified among those experiencing severe symptoms of COVID-19 and they often are prescribed metformin, which also interferes with thiamin nutrition. Add diuretics and acid blockers to the list of thiamine depleting agents.
Beriberi may be misdiagnosed as a viral infection. (NY Acad. Sci. 27 Aug, 2018. https://nyaspubs.onlinelibrary.wiley.com/doi/10.1111/nyas.13919
Fever believed to be caused by viral infections may rather emanate from dysfunction of the hypothalamus with accompanying lack of nitric oxide induced by thiamine deficiency.
American J Alzheimer's Disease & Other Dementia Jan 2008. https://pubmed.ncbi.nlm.nih.gov/19222143/
Diarrhea, nausea, vomiting, are also common symptoms associated with viral infections and thiamine deficiency.
It appears COVID-19 may actually be a fear/ lockdown-induced phenomenon resulting in B1 deficiency.
Christiaan Eijkman who discovered beriberi is a vitamin deficiency disease first thought it was caused by a virus. COVID-19 would not be the first time a vitamin deficiency was confused for a viral epidemic.
Competing interests: Write books about nutrition and formulate vitamin supplements
Dear Editor
The symptoms being reported by COVID long-haulers are the same as the known symptoms of thiamine deficiency disease, otherwise known as beriberi. Fighting the virus necessitates consumption of the body's supply of thiamine. Depending on the initial thiamine status, the outcome could be that the person is asymptomatic if they have a good supply and good nutritional status, or they could be mildly thiamine deficient, which could lead to long-hauler symptoms of beriberi, or, in the case of those particularly vulnerable such as the elderly, they could have a severe deficiency with results such as Wernicke's encephalopathy.
Thiamine is also consumed in the metabolism of sugar and other carbohydrates, thus a poor diet (i.e. the typical western diet) has a role to play in the outcome.
From this, I suggest that, rather than being the result of an extraordinarily virulent and pathogenic virus as seems to be widely believed, the pandemic we are witnessing is actually the result of a combination of a somewhat more severe virus than we have hitherto experienced, and a generally poor state of nutrition in the community as a whole.
If this was to be borne out, It suggests that suitable thiamine supplementation and other nutrition related steps could be used as a preventative measure, potentially rendering a large proportion of the population asymptomatic, could be valuable in the treatment of those under care, and could be used to treat long-haulers continuing to suffer the consequences of mild thiamine deficiency.
There are also health implications beyond the current pandemic. For example, ensuring a good level of thiamine sufficiency generally could greatly improve outcomes in the face of other viruses, including those yet to come along. Also, since many of the symptoms of mild thiamine deficiency are brain related, it may be possible to improve general mental health.
There are also clear implications for policies and guidelines relating to diet, with the adverse consequences of consumption of sugar and empty calories of processed foods, despite thiamine fortification, being made absolutely clear.
Please investigate this possibility, which up until now seems to have been completely overlooked. It seems that there is an assumption in the medical community that beriberi is a disease of the past, and it has largely been forgotten. I suggest that COVID has put it back front and centre. It seems to me, if this is borne out, the health and economic implications are enormous.
Competing interests: No competing interests
Dear Editor
Long covid is a crippling disease challenging the body and mind of patients repeatedly. We have come across cases of persistent arthralgia for several years after chikungunya in the recent past, but the tags left by Covid are much more serious and nagging. Authors have tried to define Long Covid as “not recovering [for] several weeks or months following the start of symptoms that were suggestive of covid, whether you were tested or not”. They have further tried to qualify the definition by highlighting a “distinction between very sick people who have recovered to an extent and [and have been] left with some impact of their severe sickness, versus those who had a relatively mild sickness from the start, in whom it is ongoing.” (1)
Here, experts here have taken into account two extreme poles of disease either very severe disease leaving some sequelae or mild disease with recurrent symptoms.
But, in our opinion, a large number of Long Covid patients belong to the Moderate category of disease who do not require in hospital ventilatory support, maintaining oxygen saturation on room air despite some ground glass opacities in the Lungs; they appear to have recovered and are discharged. A few weeks later or sooner many of them require rehospitalization with breathlessness, fatigue, headache, low grade fever, falling oxygen levels and newer ground glass opacities in the Lung with(out) disappearance of old shadows. A large number of them have underlying comorbidities (2). In the current scenario, such patients are morally devastated while treating physicians are confused in the absence of any treatment guidelines.
Some would continue to remain at home experiencing recurrent episodes of fatigue, exhaustion, headache, muscle aches and pin pricks. Cohort of largely asymptomatic or very mildly symptomatic people who recover well on home isolation, at present appear to be best placed. However, the less said the better as long term consequences of disease are still unfolding.
References:
1. Nabavi N. Long covid: How to define it and how to manage it. BMJ [Internet]. 2020 Sep 7 [cited 2020 Sep 22];370. Available from: https://www.bmj.com/content/370/bmj.m3489
2. Fraser E. Long term respiratory complications of covid-19. BMJ [Internet]. 2020 Aug 3 [cited 2020 Sep 22];370. Available from: https://www.bmj.com/content/370/bmj.m3001
3. Wise J. Long covid: doctors call for research and surveillance to capture disease. BMJ [Internet]. 2020 Sep 15 [cited 2020 Sep 22];370. Available from: https://www.bmj.com/content/370/bmj.m3586
Competing interests: No competing interests
Dear Editor
Long Covid
This is a much needed topic for discussion and important to learn about given that thousands of people are recovering form COVID-19 now and present to their GPs with bizarre symptoms. Some of the patients are frightened wondering if they will ever recover. The doctors in primary care are particularly concerned as there is lack of experience of post COVID management and no data to support specific management. Patients are often dismissed of their symptoms; this leads to conflicting relationship between the patient and the physician. The discussion in this video has clarified and highlighted quite a number of issues, including symptomatology and risk factors.
Till now the notion as that it is the severely ill patients admitted to the hospital who may be getting Long COVID. The data presented by one of the authors today shows that it is the patients who are cared for in the community and who have a milder illness to start with get Long COVID. This is suggestive of some kind of autoimmune phenomenon. This can herald a long-term chronic disabling illness, not known as yet.
Secondly cardiovascular effects seem to be contributing to the symptoms to a great extent, which is also intriguing. The bigger question which is haunting physicians is about long term chronic respiratory morbidity. Will COVID-19 lead to a chronic respiratory insufficiency? Obviously more follow-up is needed to learn about it.
Competing interests: No competing interests
Dear Editor,
I was happy to listen in to the webinar on Long CoVID-19. Main focus seemed to be the Cardiac impact of CoVID-19.
These are some other factors that will impinge on personal, family, social aspects of the Long CoVID-19 Syndrome
1) Musculoskeletal: Myositis and Myopathy, Fibromyalgia and Chronic Fatigue Syndrome,
2) Neuropathies and Encephalitis, Encephlomyelitis, Cerebrovascular Thrombosis and Thromboembolism,
3) Endothelitis, Acute Coronary Syndrome and Cardiomyopathy,
4) Multi-organ Inflammatory Syndrome,
5) New onset of Diabetes Mellitus and Pancreatitis.
6) Emotional Stress, and Psychologic and Psychiatric fallout,
7) Family, Social and Economic Impact,
8) Autoimmune and Haemtologic effects.
Till the Pathogenesis and Pathophysiology of CoVID-19 is fully understood, reliance will have to be mainly on Empirical Management Physiotherapy and Rehabilitation and Reassurance and Supportive Mechanisms.
Certainly the battle is going to be long and drawn out, the battlefield of Global Magnitude vision foggy and a War of Attrition...!
May Humanity win.
Arvind Joshi MBBS MD FCGP FAMS FICP,
Founder Convener and President:
Our Own Discussion Group,
Mumbai, PIN 400028;
Consultant Physician at Ruchi Diagnostic Center and Ruchi Clinical Laboratory, Sunshine CHS, Plot 58, Sector 21, Kharghar, PIN 410210;
Maharashtra State INDIA.
Competing interests: No competing interests
Re: Long covid: How to define it and how to manage it
Dear Editor,
Learning from previous medical history
As new NICE guidelines for ME/CFS have been postponed from April to August of this year, due to extensive feedback on its draft guidance, it may be pertinent to reflect on previous recommendations for ME, e.g. Graded Exercise Therapy and Cognitive Behavioural Therapy which thankfully have been omitted in the recent draft NICE guidelines, no longer being recommended.
These therapies have caused extensive harm to patients. (1, 2)
In light of recent ongoing discussion over long Covid resembling ME/CFS (3) and treatments proposed, it is pertinent to remember those who have died from ME, as ME Awareness month approaches in May, and whose inquests have shown dorsal root ganglionitis (4), e.g. Sophia Mirza (2005) and Merryn Crofts (2017) and Lynn Gilderdale (2008). Gilderdale deteriorated after Graded Exercise Therapy (reference One Last Goodbye Ebury Press). These patients all had a history of being viewed that their physical symptoms were, wrongly, psychological. It is our hope that their extensive suffering and others with ME serves as a reminder to not make the same mistake again over post-Covid patients whilst treatments are drawn up.
Yours sincerely,
Catherine and John Ashenfelter, Trustees for The Grace Charity for ME,
Maidstone, Kent
Competing interests: No competing interests
25th April 2021
1 Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Tom Kindlon, Journal of the International Association for CFS/ME Fall Bulletin 2011, Issue 19(2): pages 59-111;
2 ILLNESS MANAGEMENT REPORT: CBT, GET, AND PACING “NO DECISIONS ABOUT ME, WITHOUT ME”, The M.E. Association, May 2015
MEA-2015-Illness-Management-Report-CBT-GET-Pacing-15.05.15.pdf (meassociation.org.uk)
3 Dr Nina Muirhead Rapid Response Re: Long covid: doctors must assess and investigate patients properly Published 09 December 2020,
Dr Milan Dagli Rapid Response Re: Long covid: How to define it and how to manage it Published 18 January
2021,
Dr. Charles B Shepherd Rapid Response NICE guideline on Long Covid fails to acknowledge important clinical and pathological overlaps with ME/CFS Published 28 December 2020,
Paul Garner: on his recovery from long covid BMJ Opinion January 25, 2021
4 Death in Chronic Fatigue Syndrome (ME/CFS) - What has it Told Us? The Autopsy Files - Health Rising
Competing interests: No competing interests