GPs owe ME/CFS patients an apology
Dr Burnt Out reflects on decades of scepticism over fibromyalgia and ME/CFS, following the new NHS plan directing GPs to support delivery of care for these conditions
For years and years, some doctors have made fun of and dismissed patients with chronic pain and fatigue conditions (which often co-exist) such as fibromyalgia and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). As a medical student, I remember a rheumatologist telling my tutorial group that if a patient described pain as being ‘all over the body’, they were by definition mad. They also added that those patients who wore sunglasses at pain clinics (likely due to the sensory hypersensitivity which is a big part of ME/CFS and fibromyalgia) were deemed to have the ‘dark glasses sign’ and thereby were also ‘mad’.
The pain and fatigue was thought to be due to mental health problems, depression, poor social circumstances, poverty, stress etc. It was rarely thought to be a genuine medical issue (by that I mean pathological or physiological) as there was no test for it; the feelings and symptoms are purely subjective for the patient.
This meant that many doctors did not actually consider it a real illness, believing that those suffering were mentally ill or malingering – or both. Patients were often (but of course not always) dismissed, and there was also a big helping of stigma. This had a hugely negative effect on things like employment and welfare benefits for people diagnosed with these conditions which added to the suffering.
This mentality has put back research into these conditions by decades.
When Covid-19 arrived, many patients subsequently developed ‘Long Covid’ which often had exactly the same symptoms that people with ME/CFS and fibromyalgia had been reporting all along: severe fatigue, relapsing and remitting pains, sensory symptoms and hypersensitivity amongst others. Long Covid showed that yes, maybe these patients did have something genuinely wrong with them that wasn’t just mental health or socially induced. Maybe their immune systems were involved. Maybe ME/CFS and fibromyalgia were ‘proper’ diseases and medical problems.
It appears that underlying ME/CFS and fibromyalgia (and also likely PTSD) is a dysregulated and excessive immune response to either infection or acute stress. This releases (scientifically and experimentally proven) very high levels of inflammatory cytokines and IL-6 which then affects the brain, central nervous system and also the hypothalamic-pituitary axis. The nervous system remains in a neuroinflammatory state with the imprint of this hyper-immune mediated response forever imprinted on it. ‘Central sensitisation‘ is a term that is also often used.
Very recent research from the ground-breaking Decode ME study confirmed these findings. It also showed marked genetic differences in those individuals who have ME/CFS concerning the immune system and neurological system.
Acute infections and acute stress and trauma can both do this, like a severe ‘fight or flight’ response. This is why patients and individuals with a history of trauma, abuse and adverse childhood events are more likely to have these conditions.
It seems like the medical profession is now catching up with this, with more research and studies looking into these conditions. ME/CFS, fibromyalgia and PTSD are overlapping conditions which often have a similar aetiology – but differences in classification and possible management.
Why am I writing about this? Well, the NHS recently announced that there will be ME/CFS clinics set up in neighbourhood heath centres as part of the 10-year plan. This is long overdue. The pathway for these conditions up until recently has either been non-existent or absolutely horrendous. Possible treatments are still sadly mostly ineffective or more likely not tested in good trials.
There is one other thing that is needed from the medical profession for patients who have suffered with fibromyalgia and ME/CFS and often (but of course by no means always) had to deal with dismissive attitudes and non-belief of their conditions.
And that is an apology.
Fibromyalgia and ME/CFS are as real a disease and condition as rheumatoid arthritis is. It is time that everyone in the medical profession got up to speed with this fact.
Dr Burnt Out is a GP locum in London
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READERS' COMMENTS [1]
Please note, only GPs are permitted to add comments to articles
Really?
Clickbait headline, followed by anecdotal story of unprofessional behaviour by a rheumatologist which is bafflingly then generalised to encompass the entirety of general practice
I suspect this article says more about the author than the profession as a whole.
It is always reasonable to state that doctors should epistemologically humble when dealing with syndromes with no consistent pathological explanation. And that we should be professional and do our best to care for patients even when there is no clear evidence based treatment available.
But this crude and insulting approach helps neither doctors nor patients.