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DwME Honorary Fellow responds to RCP post

Doctors with M.E. Honorary Fellow, Professor Derek Pheby, has responded to Dr. Nina Muirhead’s article for the Royal College of Physicians, following up her 2019 article. This article comes within Royal College of Physicians initiatives to with medical specialities to improve care for Long patients. In particular, Dr. Muirhead discusses the recent surge in clinical interest in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and its relevance to the pandemic.

The article can be read here on the RCP site, is discussed here and Professor Pheby’s letter is below.

“Indeed, if there is a silver lining to the current -19 pandemic, it is that the message has finally got across that long term neurological and other sequelae following viral infections are genuine clinical entities.”

Professor Derek Pheby, Honorary Fellow, Doctors with M.E. on the recent RCP article

“By working together, and with our ME/CFS and long patients, we can be more proactive about making a diagnosis and recording the disease burden and impact on quality of life for patients and their family members.”

Dr. Nina Muirhead, Director, Doctors with M.E. on the recent RCP article

The Letter

Dr. Muirhead’s report comes at a very opportune time. For decades, the study of ME/CFS has been very much a Cinderella specialisation within the medical and scientific research community. However, interest has suddenly grown as a result of the increasing phenomenon of long Covid, which has many similarities to ME/CFS. Indeed, if there is a silver lining to the current -19 pandemic, it is that the message has finally got across that long term neurological and other sequelae following viral infections are genuine clinical entities.

An American study found that 89.1% of participants experienced post-exertional malaise, which is generally considered the defining symptom of ME/CFS [1], while a German study found that approximately half of all long fulfilled diagnostic criteria for ME/CFS [2]. A systemic review study of twenty-one studies reported much overlap of symptoms between long and ME/CFS, including fatigue, reduced daily activity, and post-exertional malaise, and some common features in terms of pathophysiology [3]. Such evidence has prompted the proposal of a new taxonomic classification, comprising both long Covid and ME/CFS within a category entitled post-active phase of infection syndromes, or PAPIS [4].

A major challenge posed by the present situation is the need to address the widespread ignorance of ME/CFS, and denial that it even exists, among a large section of the medical profession. A recent literature review found that such ignorance and denial are widespread geographically in the English-speaking world and have persisted for many decades [5], while a survey of European ME/CFS experts found that such problems were also widespread in Europe [6]. At the same time, a study of undergraduate teaching about ME/CFS in UK found that there were widespread inadequacies [7].

The literature review referred to above [5] found that ignorance and denial among doctors was paralleled by widespread dissatisfaction with their medical care among patients. Where doctors (or their family members) are themselves patients, they experience a double problem. Not only are they as subject to diagnostic error as any other patient, but they are uniquely qualified to know when they are subject to such errors. In addition, they may find themselves experiencing unsympathetic responses from colleagues who have little understanding of the condition. For these reasons, the establishment of Doctors with ME is to be welcomed. Not only does this constitute a source of for doctors facing the social, medical and practical problems associated with ME/CFS, but it also creates a group of professionals who are uniquely qualified to comment on the experience of having this illness, especially on the experience of misdiagnosis and lack of understanding on the part of colleagues.

This is just one of many recent initiatives which are contributing to pushing back the frontiers of knowledge in this area. Dr Muirhead has listed some of them. Others elsewhere in the world include the establishment of the ME/CFS Clinical Coalition in the USA, and in Europe of the EUROMENE (European ME/CFS Research Network) collaboration, which involves more than thirty institutions in twenty European countries, and means that at last we have in Europe a research infrastructure enabling us to complement the excellent research being undertaken by our colleagues in North America and elsewhere in the world [8]. Many of us who have been working in this field for many years have found it a very hard row to hoe, but at last, though the challenges facing us are immense, the future is looking very bright indeed!

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Citations and Credits

1. Davis HE, Assaf GS, McCorkell L, et al. Characterizing Long COVID in an International Cohort: 7 months of symptoms and their impact. medRxiv preprint, 05 April 2021. doi: https://doi.org/10.1101/2020.12.24.20248802

2. Kedor C, Freitag H, Meyer-Arndt L, et al. Chronic COVID-19 Syndrome and Chronic Fatigue Syndrome (ME/CFS) following the first pandemic wave in Germany – a first analysis of a prospective observational study. Preprint from medRxiv, 08 Feb 2021. DOI: 10.1101/2021.02.06.21249256 PPR: PPR279456 

3. Wong TL, Weitzer DJ. Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)—A Systemic Review and Comparison of Clinical Presentation and Symptomatology. Medicina 2021, 57(5), 418; https://doi.org/10.3390/medicina57050418

4. Friedman KJ, Murovska M, Pheby DFH, Zalewski P. Our Evolving Understanding of ME/CFS. Medicina 2021, 57(3), 200. https://doi.org/10.3390/medicina57030200

5. Pheby DFH, Araja D, Berkis U, et al. A Literature Review of GP Knowledge and Understanding of ME/CFS: A Report from the SocioeconomicWorking Group of the European Network on ME/CFS (EUROMENE). Medicina 2021, 57, 7. https://dx.doi.org/10.3390/medicina57010007

6. Cullinan J,; Pheby DFH, Araja, D, et al. Perceptions of European ME/CFS Experts Concerning Knowledge and Understanding of ME/CFS among Primary Care Physicians in Europe: A Report from the European ME/CFS Research Network (EUROMENE). Medicina 2021, 57, 208. https://doi.org/10.3390/medicina57030208.

7. Muirhead N, Muirhead J, Lavery G, Marsh B. Medical School Education on Myalgic Encephalomyelitis. Medicina 2021, 57(6), 542; https://doi.org/10.3390/medicina57060542

8. EUROMENE. Available online: http://euromene.eu (accessed on 14 July 2021).

Prof. Derek Pheby

Honorary Fellow

Visiting Professor of Epidemiology, Buckinghamshire New University, Founder, European ME/CFS Research Network (EUROMENE), Project Coordinator, National ME Observatory,