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
Have you got a view you want to share with Pulse?
We’re always open to first-hand pieces and opinions from GPs.
Email your piece for consideration to be published on our site.
Visit Pulse Reference for details on 140 symptoms, including easily searchable symptoms and categories, offering you a free platform to check symptoms and receive potential diagnoses during consultations.
Related Articles
READERS' COMMENTS [21]
Please note, only GPs are permitted to add comments to articles
Thanks for your article. This is indeed a welcome development, hopefully the neighbourhood health system can materialise an integrated approach using more non-pharmacological techniques in a holistic way. Here’s a similar reflection on how to approach a fibromyalgia consultation. https://www.linkedin.com/pulse/how-approach-fibromyalgia-consultation-ogu-ngozi-k0p5e/?trackingId=DbWn7Az8QiCu7pSUUkoNPg%3D%3D
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.
Frustrating that this article denigrates and demonises GPs but mentions only one rheumatology specialist for its generalising accusation. As GPs we advocate for our patients to get a diagnosis/ diagnosis of exclusion. More anti GP rhetoric – are they really a so called burnt out locum (hard to believe) or a puppet of the government propaganda agenda. Poor title and unnecessary. Unsure why Pulse has published this – purely click bait. I think Medical platforms should be above this.
Well I never ever told a patient it all in the mind. . It assumes there is an artificial separation between mind and body. All life, our perception of it, is in the mind. It is a meaningless statement.
When I stub my toe the only reason that I know it hurts is because I have a thalamus and cortex in my head to interpret it as pain and discomfort. The severity of the pain will depend on my genetic predisposition, the meaning I give to that perception and the level of stress I am under at the time. My discomfort or the agony of my stubbed toe is in my mind.
There is the genetic condition where sufferers cannot feel any pain. They must develop behavioural strategies to avoid injuring themselves. All we have for ME is behavioural and psychological support including medication for depressing condition. There is a risk that ME patients will deny themselves treatments while waiting for a medication to treat the “physical” cause. The causes will be many including a genetic predisposition involving complex brain process of which we have no understanding, nor do we know of of processes in our gut microbiome that may effect our perceptions.
I agree with the article: ME/CFS (and plenty of evidence re Long Covid) have languished in the minds of many as predominantly psychosocial conditions. Graded exercise therapy and CBT as the only treatment and with little or no funding into biomedical research. Over 40yrs, I’ve seen plenty of dismissive and reductive attitudes to doctors of all walks. Not all, obviously. I support a call to focus on the biomedical research outlined in the article and the plea to recognise our own cognitive dissonance in seeing perception as the cause, rather than allopathy.
As some have mentioned. Clickbait. I suspect Dr Burnt Out is seeking to absolve themself of their own longstanding cynical approach to ME/CFS by suggesting that all other doctors do the same. Most of the GPs I have worked with and encountered have done their best to show empathy and professionalism to their ME/CFS patients and attempt to get them help despite the relative paucity of effective secondary care support.
I have forged an excellent career with great enjoyment supporting patients that traditionally would be called heartsinks, and I think all of them would be confused if I wrote an apology
GPs are wholistic, but it seems some Rheumatology Professors (which is what should have been in the title) are not.
I think I went to a diffferent Medical School.
But perhaps GPs should apologise for not calling out poor teaching and bad wholisticism from consultant Rheumatologists, when they were students, who could not have known any better than their esteemed profesors?
Psychological diseases are not real diseases?
Having been on both sides of this dynamic, I can understand the author’s point of view and also those of the commenters. My son developed post COVID severe ME with POTS in 2020 and we have experienced a huge variation in NHS consultations. From one doctor dismissing it all as functional (he couldn’t stand up at the time due to untreated POTS), to a wonderful paediatric cardiologist who listened and investigated when others simply told him to do more exercise. More exercise and pushing through the fatigue is the worst possible advice for someone with fatigue and post exertional malaise and trying to follow this in the first few weeks of the illness resulted in a massive deterioration which he has not recovered from.
He was later found to have POTS and LVH with a reduced EF on MRI.
His ‘brain fog’ was severe enough to warrant a brain MRI which showed ischaemic damage. In some ways, he is fortunate to have had abnormal investigations because those with entirely normal results are frequently not offered appropriate support.
He continues to have severe fatigue nearly 5 years later and all of this started with a very mild acute COVID.
Before this happened, I considered myself to be good at listening and didn’t dismiss my patients when investigations were normal. Now I realise how far away I was from giving good care to others in the same position that my son now finds himself.
Now that I work in a secondary care setting with this patient group I hear a wide range of stories from patients about their care. Many describe excellent care from their GPs but there are also many that have not had that experience. Better education and training is key to help us as GPs to understand this condition better- I certainly didn’t have this training until my son unfortunately became so unwell.
There are well researched physiological pathologies in ME/CFS and Long COVID with emerging treatment options becoming available. It is a very definite physical illness but it is hugely under researched with a limited number of treatment trials. It is certainly complex but using ”physical” like this in your comment implies that you don’t believe that it is. There are some treatments available apart from anti depressants.
https://gbr01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.sciencedirect.com%2Fscience%2Farticle%2Fpii%2FS1043276023000553&data=05%7C01%7Ccilla.rosen%40nhs.net%7C37036ab3e3734676942c08db4172fd01%7C37c354b285b047f5b22207b48d774ee3%7C0%7C0%7C638175734336590680%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000%7C%7C%7C&sdata=p1ZfchtXpCUiVYXFXQGzY3fYEL5xZmn7Bh2LPRYGeAQ%3D&reserved=0
This is a massive extrapolation – and, as others have pointed out, clickbait.
The study was looking only at a group of patients taking interferon-alpha for hepatitis C. It noted that in this highly specific group of patients having a powerful biological treatment for a known biological disease, there was a correlation between immune markers and later symptoms resembling ME/CFS.
So should the headline read “GPs owe an apology to Hepatitis C patients on interferon A who develop fatigue?”
No that would be stupid because I bet none of us would have told those patients that there was no detectable biological cause for their fatigue. We would presumably have told them, correctly, that the fatigue is likely to relate to either the Hep C or its treatment.
So I fail to see where the apology comes in.
… or to paraphrase the findings of the study.
Fatigue in patients taking a fatigue-inducing treatment for a fatigue-inducing infection is likely to have a biological element.
I agree with the above comments.
One anecdote about a rheumatologist, not generalised to all rheumatologist, but to all GPs.
I think the author is trying to foist his own guilty conscience on to other GPs
Apparently I’m still ruminating on the bizarreness of this article.
It is odd that the article and the linked 2019 study press release refer to ME/CFS at all since by definition the group of patients being studied did not have ME/CFS. They had fatigue in the context of Hep C and Interferon A. They would be excluded from the diagnostic category of ME/CFS due to symptoms being explicable by another condition.
Recommend book age of diagnosis by Suzanne O’Sullivan. Thought provoking about diagnoses such as long coving, chronic fatigue. Available as abridged version on BBC Sounds
I don’t know any doctor who claimed medicine had a cure for everything ?
Dr Burnt Out has made a good decision to write under a pseudonym
It is very disappointing to see a colleague misrepresent GPs views of functional or psychosomatic illness as “dismissive” or “non belief”.
Functional illnesses have multiple causes but chief among them are previous trauma, health beliefs and genetic elements. The immune system and ANS are very likely to be the mediators by which mind and body are linked. Unfortunately the mind-body dichotomy does not serve these patients well as their illness has a foot in both camps.
Acknowledging the psychological influences that affect their illness is not dismissing their symptoms or non belief. Claims that this is dismissive actual reveal the author’s own prejudice – psychological illnesses are less important that physical. I do not know a single GP who thinks that is the case.
TERRIBLE HEADLINE – All GPs owe these patients an apology?? I think not, most of us deal with these challenging cases on a daily basis and treat them with care and respect actually. The Rhuematologists in my region have refused to see these patients now, mainly due to the complexity and difficulty of the consultations where these is no treatment available. The Rheumatologits in my region have left it to the GP to diagnose and manage on a day to day for the rest of the patients life.
Accepting, as I do, that CFS/ME is real.
This article still reads as hundreds of words of lip service skirting around the real issue for us as medical providers.
Now what MEDICALLY speaking are you going to do about it?
Oh yeah – “Possible treatments are still sadly mostly ineffective or more likely not tested in good trials. ”
P.S. if unclear, simply saying GPs will lead a service is not an answer, its the very same non-answer.