The Irish Times provides a comprehensive report on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome including the history of the disease, the stigmatisation, interviews with sufferers, recent research and hypotheses around microclots and potential treatments.
Sufferers of myalgic encephalomyelitis, or ME, have long felt disregarded by some medical professionals who believed their pain and exhaustion to be a psychological disorder. More recently, patient activism, combined with new data on the underlying biology of the illness, has resulted in changes in treatment guidelines and a renewed focus on ME as a biologically grounded post-viral disease.
Moira Dillon from ME Advocates Ireland thinks that even the term “chronic fatigue syndrome” does sufferers a disservice. “ME is a multi-symptom system disease,” she says. “It’s primarily neurological. Symptoms may be cardiovascular, immunological, endocrinological, respiratory, hormonal, gastrointestinal.”
She thinks that newspapers often feature people with a milder form of the disease and that this leads to a misunderstanding of how serious it can be.
“Those with very severe ME lie motionless, are tube fed, suffer multiple level pain, suffer periodic paralysis, blood pressure and heart issues, muscle weakness, numbness, cognitive dysfunction, visual difficulties, muscle spasms, multiple sensitivities, gut issues, sleep issues. They have head shakes and limb shakes and very disturbed sleep … The common cardinal characteristic is post exertional malaise.”
Until 2021, [the NICE Guideline on ME/CFS] recommended graded exercise therapy. This involves people being given programmes of increasing physical activity. It’s now considered by many to be harmful for people with ME, whereas energy management, working within a patient’s reduced energy levels, is seen as preferable. The older guidelines were partly based on the now controversial PACE study on CBT and graded exercise therapy for ME, undertaken in the noughties by psychiatrists and psychologists with UK government funding. In recent years, researchers and patient advocates have reanalysed these findings.
Although the underlying mechanism of ME is still poorly understood, the idea that it is a serious physical disorder is no long controversial. In Ireland, the HSE is in the process of developing their first ever clinical guidelines on the disease. HSE national clinical adviser Dr Ciara Martin chairs a multidisciplinary group of clinicians and patient representatives devising these guidelines and she hopes to see it integrated into the training of medical professionals in time. It’s too early to get much detail on this but it will do one key thing, she says:
“It will establish ME as a biological illness. That has always been the concern of people with ME, that old fashioned stigma that it was a psychological one.”
Long Covid has been a “game-changer”, says [Brian Hughes, professor of psychology in NUIG].
“It has debilitated so many frontline healthcare workers, people who know a lot about medicine and how diseases work. They have lingering symptoms that are so similar to ME it has led some people to conclude that it actually is ME. And these doctors are not fooled by traditional medical folklore that psychotherapy will do the trick. [Covid] has bizarrely clarified to the world that ME is not in the head, that there’s a viral pathological basis for it.”
Some Long Covid and ME patients have travelled to clinics in Europe to get “apheresis” treatments, where the patient’s blood is filtered to remove these [possible micro] clots. [Dr William Weir, an infectious diseases expert] believes this can help some patients, though he doesn’t believe it can be a permanent cure.
[Douglas Kell, a biochemist working in Liverpool University] would also like to see trials into anticoagulation treatments for ME and Long Covid patients. Others aren’t as confident that abnormal clotting explains the symptoms in ME or Long Covid.
Dr James O’Donnell, director of vascular biology at the RCSI, was involved with the Irish Covid-19 Vasculopathy Study. He and his colleagues discovered “sustained clotting activation” in 25 per cent of convalescent patients, but, he says:
“It remains unclear whether this ongoing clotting activation that we and others are seeing plays any direct role in the symptoms associated with Long Covid syndrome”.
He notes that anticoagulation drugs can be dangerous for patients.
“Consequently, before blood thinning treatments are introduced for patients with Long Covid, we need to be sure that we are not doing more harm than good.”
“We have covered preliminary research into micro-clots in Long Covid, and the use of apheresis (“blood washing”) as a possible form of treatment for Long Covid, on the ME Association blog, and Facebook, on many occasions over the past few months.
“I am carefully following the discussions about microclots in ME/CFS and the research and trials of apheresis. We need to see more evidence that microclots are an issue in ME/CFS and any potential treatment clearly needs to be validated in clinical trials that can assess effectiveness and safety.
“In our current state of knowledge, apheresis has to be regarded as an expensive and highly speculative form of treatment in both Long Covid and ME/CFS. Consequently, it is not available here in the UK as an NHS treatment for these conditions.
“Some people with ME/CFS and Long Covid are travelling abroad at considerable expense to be treated without knowing if microclots really are an issue for them and with no guarantee that the treatment might work or if it might cause additional complications.
“Until we have sound research evidence from more than one properly conducted clinical trial to indicate that apheresis is a safe and effective treatment for Long Covid (or ME/CFS) this is not a treatment that we can recommend at this time.”
Dr Charles Shepherd
Trustee and Hon. Medical Adviser. The ME Association.