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Doctors believe in ME

In a follow up to her 2019 blog post, Dr Nina Muirhead discusses a recent surge in clinical interest in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

In 2019, I wrote to the RCP to share my experience of developing a neurological disease with multisystem symptoms following a virus. This is a disease characterised by symptom exacerbation following exertion, orthostatic hypotension, disturbed sleep, fatigue and cognitive impairment. We are now facing the next post-viral chronic disease challenge, post-acute sequelae SARS-CoV-2 infection (PASC) or ‘long COVID’. Averting the next potential ‘disaster’ is critically dependent on us, as healthcare providers, believing and providing supportive care to our post-viral patients. Doctors are now being urged to diagnose and systematically record cases in computerised medical record (CMR) systems. This is especially important, as the REACT research numbers show that the illness burden is far higher than clinicians are currently recording. Long COVID patients are presenting to us, many with a long list of multisystem symptoms strikingly similar to the multisystem symptoms of ME/CFS, and we are on the steep learning curve to recognise this disease.

In 2019 ME/CFS was in a clinical blind spot. Meanwhile, biomedical researchers and patients were excited by the emerging evidence. In sharing my experience in 2019 I wrote: ‘red blood cell deformability is diminished in patients with ME/CFS; there is confirmation of widespread brain metabolite abnormalities in ME/CFS’. Similar phenomenon are being reported now; phenotype and deformability of blood cells altered by COVID-19 lasting for months after coronavirus infection, as well as evidence of brain metabolite changes in patients with long COVID. The hidden impact on quality of life of ME/CFS and Long COVID, on both patients and their family members, is enormous, and this is something we should be asking our patients about when we see them in hospital, clinic or primary care.

There have been four recent significant developments in ME/CFS.

Doctors with ME have responded to the overwhelming clinical and public interest and formed an association of clinicians, patients and researchers. Doctors and GPs are already signing up to hear the latest scientific updates and keep abreast of NICE guideline developments.

DecodeME, the largest ever DNA study of ME/CFS, is recruiting more than 20,000 patients for a genome-wide association study. Developed by the CFS/ME research collaborative (CMRC) and supported by Action for ME, Forward ME, UKRI and NIHR, the study aims to help pinpoint the genetic causes of disease and guide drug development. Our patients who have ME/CFS can register now, and saliva samples will start being collected from September 2021.

The ME/CFS Priority Setting Partnership has been set up to identify our top ten priorities for ME/CFS research, and is led by people with ME/CFS, carers and health professionals.

There has been an exponential increase in biomedical ME/CFS research publications, which have identified that ME/CFS is associated with underlying abnormalities of the central and autonomic nervous systems, immune dysregulation, disordered energy metabolism, and redox imbalance.

What next? We all have a role to play; the long COVID clinicians will not be able to bear the chronic post viral health burden alone. This is a disease that needs to be recognised by all medical professionals. By working together, and with our ME/CFS and long COVID 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. It is only by widespread professional education, information and support, and proactive coding, that the true scale of this hidden health crisis will be revealed. Following this, appropriate funding can be allocated to manage and support patients, new medications will be explored, and perhaps, one day, we will discover a biomarker. That would make life easier – believe ME!