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BMJ Letter — Long covid: I’d rather have a well researched and well informed doctor than “become my own physician”, 2024, Karen L Hargrave
- Thread starter SNT Gatchaman
- Start date
I'm posting the letter in full as it makes important points —
Karen L Hargrave freelance researcher and policy analyst
My husband and I have both been diagnosed with long covid and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). I developed long covid in 2020, my husband in 2022. These days I am more functional but still have to limit exertion. My husband is severely affected.
There is much I can relate to in Jreidini’s account, not least spending hours scouring research papers and contacting support groups. Almost every clinician I have seen has been less informed than me about long covid and ME/CFS. A patient would be horrified if, seeing a neurologist for a brain tumour, they realised the neurologist knew less about it and was less familiar with the latest research than them. I question why patients with an energy limiting condition need to become their own physicians to access relevant and evidence based care.
I went initially to the NHS for treatment—we judged doing so for my husband as a pointless drain on our time and energy. The only expert advice we received was when we sought private treatment—not because of long waiting lists, but because the NHS does not offer any useful care. This is institutional failure.
This country has been forced by an onslaught of long covid to play catch-up after decades dismissing ME/CFS and post-viral illness as psychological ailments. The National Institute for Health and Care Excellence only changed its ME/CFS guidance to rule out exercise therapy—long acknowledged to worsen symptoms—in 2021. There are many ongoing cases of patients with severe ME/CFS in NHS hospitals receiving treatment not in line with evidence based guidance.
I read the call for patients to become their own physicians, but I am exhausted. Let’s not let our actual physicians off the hook. I’d rather have a trained, well researched, and well informed doctor.
Karen L Hargrave freelance researcher and policy analyst
My husband and I have both been diagnosed with long covid and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). I developed long covid in 2020, my husband in 2022. These days I am more functional but still have to limit exertion. My husband is severely affected.
There is much I can relate to in Jreidini’s account, not least spending hours scouring research papers and contacting support groups. Almost every clinician I have seen has been less informed than me about long covid and ME/CFS. A patient would be horrified if, seeing a neurologist for a brain tumour, they realised the neurologist knew less about it and was less familiar with the latest research than them. I question why patients with an energy limiting condition need to become their own physicians to access relevant and evidence based care.
I went initially to the NHS for treatment—we judged doing so for my husband as a pointless drain on our time and energy. The only expert advice we received was when we sought private treatment—not because of long waiting lists, but because the NHS does not offer any useful care. This is institutional failure.
This country has been forced by an onslaught of long covid to play catch-up after decades dismissing ME/CFS and post-viral illness as psychological ailments. The National Institute for Health and Care Excellence only changed its ME/CFS guidance to rule out exercise therapy—long acknowledged to worsen symptoms—in 2021. There are many ongoing cases of patients with severe ME/CFS in NHS hospitals receiving treatment not in line with evidence based guidance.
I read the call for patients to become their own physicians, but I am exhausted. Let’s not let our actual physicians off the hook. I’d rather have a trained, well researched, and well informed doctor.
Jonathan Edwards
Senior Member (Voting Rights)
The implication is that there is useful care that the NHS is not providing. There isn't.
But I think it is an important point that the NHS is not even attempting to provide competent advising and supporting staff. If ME/CFS is real like diabetes is real then it should be handled by the public insurance system.
But I think it is an important point that the NHS is not even attempting to provide competent advising and supporting staff. If ME/CFS is real like diabetes is real then it should be handled by the public insurance system.
Andy
Retired committee member
My GP is a decent man, and believes in the condition, but basically said to me "I suggest you go and do your research, and if there is anything you want from me and it is legal, I will prescribe it." Of course we both knew there was absolutely nothing he could prescribe.
25 years of this. A lost career, a lost life, and still we are no further forward with this disease.
What on earth is wrong with medical profession?
Jonathan Edwards
Senior Member (Voting Rights)
There is a lot wrong with the medical profession but not this. The reason there is nothing to treat ME/CFS with is that there are no clues as to what to do. It is an illness with a mechanism that so far we have no understanding of. It is a bit like saying why didn't Peter Higgs find his Higgs particle in 1964 having said it was there. Nobody had a means to show it was there.
Mmm... but for most of the last 25 years that I have been ill, nobody has been bothering to look for the mechanism. If you don't look you won't find it.
My brother is actually a theoretical physicist. He has an incredibly inquisitive mind. In contrast, the attitude of a lot of the doctors I have encountered has been: if it isn't in our text books it doesn't exist. I am not sure physicists and medical doctors are very similar. Except maybe in that they both seem to have gigantic egos!!
It would be interesting to have a competition. Physicists v doctors, to see who could come up with an answer to the riddle of ME first.
Agree and as a collective there could have been decent record keeping so we weren’t bucketed with other conditions and later additional comorbidities and misdiagnoses were logged. Along with being approachable enough people felt safe if they were kept an eye on to see prognosis be more accurate. And if people suggested certain things worked then that taken seriously in case there were groups for which certain things helped a bit or had specific symptom issues (the sleep one and reversal seems a big differentiator between types)
None of these needed them to know where to look in fact I think most lay persons would assume this goes on as due process and couldn’t imagine the wiping of narratives and lump and dump that took place instead.
goodness also knows why there isn’t for all an obvious scheme where whatever the trial was people aren’t being recorded when they worsened and tgat creating big red flags.
Jonathan Edwards
Senior Member (Voting Rights)
That isn't actually the case. People spent years looking for viruses that might cause 'ME'. When retroviruses appeared they looked for retroviruses and claimed they had found one. People have claimed to find abnormalities in metabolism and NK cells and goodness knows what. Even Simon Wessely looked to see if lymphocytes were different in ME/CFS.
But the great majority of research physicians have not looked simply because they cannot see any clues clear enough to think they might be worth following.
The point about the Higgs particle is that until CERN was built there was no possibility of finding one. I spent my working life trying to find explanations for mysterious diseases and exactly the same problem applied. Until around 1980, when gene cloning became practical, we knew nothing about complex mechanisms because we knew nothing about the proteins that interact. By 1990 we had read off most of the proteins and could start to answer questions. I think it very likely that whatever is wrong in ME/CFS is something we do not have any means to measure at present. Maybe GWAS will give us the break we need.
'Theoretical doctors' are just as inquisitive as theoretical physicists but they are the tiny minority who work in labs. Most doctors and physicists have to get on with the work in hand. I don't see the relevance to our problem. Doctors tend to assume they know what they don't and so do physicists. Medicine is much less precise so doctors get away with more I suspect. But so what?
A lot of doctors think ME/CFS isn't really an illness, but then so do the great majority of the general public.
And you can hardly blame doctors for not doing research when the public shows no interest in funding it or in sharing out funding evenly. Anyone researching any disease has to struggle to get money to do anything.
I recall Angela Vincent saying that 10+ years ago.
Yes, I'm a bit worried the Decode ME data may be too heterogeneous i.e. a number of diseases (different pathologies) get the label "ME/CFS". In dementia the first gene turned up relatively early [apolipoprotein] but the subsequent (2?) genes required combining the data from a number of Decode ME sized studies [GWAS - common variants]. Another strategy may be the link up with PrecisionLife i.e. to try to identify sub-groups/different pathologies.
I wonder if rare variants (genetic studies) might actually be a way to overcome the problem caused by heterogeneity in ME/CFS?
I rather like your (SNT Gatchaman) post (from memory) i.e. "Doctors need to demand diagnostic tests ---". I'd tweak that slightly i.e. "we need to co-operate with Doctors and vice versa --- to deliver diagnostic tests (biomarkers) ---". @Jonathan Edwards is a brilliant example of what we do/would benefit from --- so often it seems adversarial (I don't necessarily blame the patients!).
The tools might be coming though. One recent new technique to look at immune cell metabolism is SCENITH, which is an advance on Seahorse —
SCENITH: A Flow Cytometry-Based Method to Functionally Profile Energy Metabolism with Single-Cell Resolution (2020)
Rafael J. Argüello; Alexis J. Combes; Remy Char; Julien-Paul Gigan; Ania I. Baaziz; Evens Bousiquot; Voahirana Camosseto; Bushra Samad; Jessica Tsui; Peter Yan; Sebastien Boissonneau; Dominique Figarella-Branger; Evelina Gatti; Emeline Tabouret; Matthew F. Krummel; Philippe Pierre
Energetic metabolism reprogramming is critical for cancer and immune responses. Current methods to func- tionally profile the global metabolic capacities and dependencies of cells are performed in bulk.
We designed a simple method for complex metabolic profiling called SCENITH, for single-cell energetic metabolism by profiling translation inhibition. SCENITH allows for the study of metabolic responses in multiple cell types in parallel by flow cytometry. SCENITH is designed to perform metabolic studies ex vivo, particularly for rare cells in whole blood samples, avoiding metabolic biases introduced by culture media. We analyzed myeloid cells in solid tumors from patients and identified variable metabolic profiles, in ways that are not linked to their lineage or their activation phenotype.
SCENITH’s ability to reveal global metabolic functions and determine complex and linked immune-phenotypes in rare cell subpopulations will contribute to the information needed for evaluating therapeutic responses or patient stratification.
Link | PDF (Cell Metabolism)
Used for example in dendritic cells —
Distinct metabolic states guide maturation of inflammatory and tolerogenic dendritic cells (2022)
Adamik, Juraj; Munson, Paul V.; Hartmann, Felix J.; Combes, Alexis J.; Pierre, Philippe; Krummel, Matthew F.; Bendall, Sean C.; Argüello, Rafael J.; Butterfield, Lisa H.
Cellular metabolism underpins immune cell functionality, yet our understanding of metabolic influences in human dendritic cell biology and their ability to orchestrate immune responses is poorly developed.
Here, we map single-cell metabolic states and immune profiles of inflammatory and tolerogenic monocytic dendritic cells using recently developed multiparametric approaches. Single-cell metabolic pathway activation scores reveal simultaneous engagement of multiple metabolic pathways in distinct monocytic dendritic cell differentiation stages. GM-CSF/IL4-induce rapid reprogramming of glycolytic monocytes and transient co-activation of mitochondrial pathways followed by TLR4-dependent maturation of dendritic cells. Skewing of the mTOR:AMPK phosphorylation balance and upregulation of OXPHOS, glycolytic and fatty acid oxidation metabolism underpin metabolic hyperactivity and an immunosuppressive phenotype of tolerogenic dendritic cells, which exhibit maturation-resistance and a de-differentiated immune phenotype marked by unique immunoregulatory receptor signatures.
This single-cell dataset provides important insights into metabolic pathways impacting the immune profiles of human dendritic cells.
Link | PDF (Nature Communications) [Open Access]
Jonathan Edwards
Senior Member (Voting Rights)
My reservation about looking at metabolism in circulating immune cells is that circulating cells are more or less by definition doing nothing useful or important. Once they are out of the body and cultured whatever might have been affecting them may be lost. They might be providing clues as to problems elsewhere but it may be unwise to bank on that.
Dr Edwards, I speak for all of us who have been harmed by medical neglect and gaslighting when I say that is something that the NHS can do: teach pacing.
I lost a collosal amount of functioning due to medical gaslighting. I went from mild to very severe and bedbound within a year.
I could walk for miles on a good day, had a fairly fulfilling social life, could cook, volunteer, work part time from home on creative projects (i am a writer and musician), play small gigs, go on day trips to London or weekends away. Then after 3 years of gaslighting of the 'take antidepressants you're depressed' vein, a GP who really seemed to care, but had refused to refer me to any specialists, waffled on about the mind and body connection until I was so mixed up I GETed myself into bed. Every single NHS doctor and several private ones I saw also gaslit me. When I had become almost totally housebound a rheumatologist tried to get me to do GET even after hearing my story. When I refused he rather smoothly manipulated me into 'pushing at the edges of my envelope' and I rapidly declined further.
My life was completely destroyed because I trusted my doctors and wanted to get better. The worst part is that the local ME service teaches pacing, and if my GP had reffered me there my life and functioning would have been saved.
Since I have gotten worse all but three doctors I have spoken to have continued to gaslight me on some level.
This is the type of care we are given currently. It is far worse than nothing. Your comments imply that the NHS's current treatment of us is neutral. It is in fact utterly destructive and malignant. It has utterly destroyed my life and reshaped the lives of my loved ones. All I wanted was to be well enough to rejoin the workforce and now my life is over, very possibly forever.
All that needed to happen to preserve my functioning was for a doctor to validate my experience, tell me to rest when my symtoms flared and try not to trigger PEM, and warn me off intense exercise. But unfortunately this was too much to ask of our hallowed national health service.
Jonathan Edwards
Senior Member (Voting Rights)
I wasn't implying that, or at least intending to. I was simply questioning the implication that there are specific treatments that are available outside the NHS that are not being provided.
I include pacing under advice and support.
Okay that's fair enough. But so many of our medical professional advocates do seem to believe that we are simply getting no help, when the reality is much worse.