Nearly 200 health professionals have written to the health secretary saying that patients with the illness are being left to ‘languish behind closed doors’
The Times (UK)
Doctors have said that NHS patients with myalgic encephalomyelitis (ME) risk starving to death because of unsafe and “unconscionable” standards of care.
The letter calls for the government to take action to address the “serious patient safety concerns” for patients with ME, an illness which affects about 250,000 people in the UK.
More than 200 health professionals including GPs, hospital consultants and nurses have written to Wes Streeting, the health secretary, saying that patients with the illness are being left to “languish behind closed doors” because specialist NHS services to provide safe care “do not exist”.
ME, also known as chronic fatigue syndrome, is a complex neurological disorder that leads to symptoms including extreme exhaustion. Severe cases can be fatal, with patients bedridden and unable to eat or drink, but these patients currently “fall through the cracks” as there is no specialist NHS care provision.
A letter signed by 202 doctors and NHS staff calls on ministers to convene an ME clinical task force providing “emergency specialist guidance in cases where patients are hospitalised”, as well as to commit to holding NHS trusts “accountable” for care.
They write: “There is little access to truly specialist ME care or treatment within the NHS and paradoxically, the sicker a patient is, the less care they receive.
“Even if doctors and healthcare professionals are knowledgeable and willing to treat patients, the infrastructure to provide safe and appropriate care does not exist.”
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Yeah, it’s a strange one because it’s two different diseases in one.
Since the 1980s, a disease characterised by fatigue and mostly thought to be caused by psychological factors has been called “chronic fatigue syndrome”.
Since then, we (biomedical researchers) have found a far more specific disease within this broad category, often caused by viral infections, which we named Myalgic Encephalomyelitis, which is what an original outbreak was called in London, I believe.
Anyhow, M.E. has very strict diagnostic criteria, requires some features that don’t present in any other illnesses, and requires a substantial decrease in physical functioning (>50%). Here’s the International Consensus Criteria for example. Interestingly, some cases present without the “main symptom” of fatigue, as defined by chronic fatigue syndrome. Most chronic fatigue syndrome diagnosis criteria, such as the Oxford Criteria, require only unexplained disabling fatigue. For M.E. subgroups defined by strict criteria, we also have clear physical abnormalities present, which show it is a physical disease and not psychosomatic.
The problem arises because most of these discoveries were made in the past decade. So, nearly every trained doctor and medical professional who advises the government treats M.E. as a “psychosomatic fatigue disease,” which is really far from what it actually is. This has even led to a few high-profile cases of patients dying in care after being refused a feeding tube and dying of starvation, for example, since M.E. can cause fatal gastroparesis.
In practice, patients are often treated for psychosomatic fatigue and even blamed for their symptoms, which is far from the actual case. Unfortunately, most of the English-speaking world is quite behind on this. The Mayo Clinic Proceedings is decent, but the CDC, NHS, and NIH are still holding onto some outdated beliefs. The real push has come from Austrian and German-speaking medicine (including Dutch), where some major discoveries have been made recently.
We had a young patient tragically die in our care a couple of months ago; there seem to be some cases that are progressive.
It’s similar to fibromyalgia in that it includes a lot of symptoms, is of unclear aetiology, and has often been treated as psychosomatic in the past. But, in practice, they are quite different diseases, with fibromyalgia being characterised by high levels of pain and thought to be a pain processing disorder with “central amplification.” Meanwhile, M.E. is mostly characterised by severe functional disability, and we have found different immune abnormalities and depletions, as well as problems with mitochondria and increased clotting. As of now, we don’t know how this all fits together. Something I find interesting is the only drug that has had some positive clinical trial results is an AIDS drug. Although none are approved for the disease as of now.
I suppose my next question would be as to whether or not ME appears to be a centrally-mediated disease like fibromyalgia is. There are a lot of very strange ways problems with the central nervous system can present, and it seems like ME has a broad enough swath of signs and symptoms that it is either a multi-system disease, or of a centrally-mediated etiology.
We do know it is multisystemic. We don’t know if it is mediated by the CNS. But there are some extensive neurological problems. From the latest long COVID research, the leading theory is that, (I’ll say this in vague terms because I don’t want to sound too concrete as this is all hypothesis). Is that the Immune System, specifically T-Cells and B-cells, along with the complement system start working weirdly, we start seeing depletions dysregulations and abnormalities, which don’t happen in people who recover normally from COVID.
Then we start seeing problems with oxidative stress, and biopsies show damaged mitochondria with numerous abnormalities. It is thought that the problem with the mitochondria, including the resulting increased oxidative stress, which we havn’t fully figured out. Starts causing neurological issues.
In that sense, the leading theories is that it is multisystemic and immune mediated, but we obviously can’t rule out centrally medicated as we are still in such an early stage of research.
I’m extremely curious what we’ll find out in the next couple decades :).
There’s also the possibility that “M.E.”. Just like the “waste-bucket diagnosis” it’s predecessor “CFS” was, is more than one disease. Which would explain the heterogenity and diverse symptom presentations. But what most leading researchers seem to think is that it can take a progressive form (through PEM, don’t have time to explain what PEM is but it’s a defining feature and it can lead to permanent worsening of the disease), which can cause it to start producing more symptoms and affecting more body systems.
BTW: I appreciate your curiousity and open-mindedness. Gives me some faith in the medical field. Most older colleagues who aren’t specialised in this they hear ME, CFS etc. and their mind goes oh like psychosomatic fibro type stuff and they refuse to read newer research because it’s a “waste of their time” or to genuinely listen to one of us explain. It’s quite shocking too see this kind of groupthink. The new fashion for these types of docs is to diagnose everything they can’t understand from weak limbs to seizures to M.E. type presentation as “Functional Neurological Disorder”, the literal DSM-5 successor of conversion disorder aka. hysteria. I’ve had a decent couple patients who ended up having rare-autoimmune diseases or even a simple MS type presentation, who lived multiple years with the FND misdiagnosis.
I’m pretty sure I’ve gotten a couple board questions wrong because I leave stuff like conversion disorder/functional neurological disorder so far down my differential that it’s basically in the trash anyways. I see it as a diagnosis of extreme exclusion.
The immune mediation would explain why AIDS medications might work though, particularly if it’s one of the viral synthesis inhibitors.
Yeah definitely. Really appreciate your sceptical of the psycho/functional stuff too. I find some schools of medicine have a big ego to assume anything we can’t figure out must be psychological and not that we just haven’t figured out what’s wrong yet.
It’s a common story in medicine. From peptic ulcer to lupus, illnesses thought to be psychosomatic or “hysteria” turning out to be genuine physical illnesses.
Agreed. It’s always more complicated than “just psychological”. There can be a psychological element to it because things like emotional stress can have downstream effects by way of over-activation of the sympathetic nervous system, but it’s not a be-all-end-all explanation. The mind is powerful and can exert influence over the rest of the body, but that just means that you have to treat the psychological portion as well as the somatic portion.
And patients with psychological issues tend to realise their issues are psychological in nature and vice versa. Although both have downstream effects. And in my above example. The psychological burden of thinking you have (having) a debilitating psychical illness but being disbelieved by your doctors must be enormous.
I didn’t originally set out to go to a DO school, but I do like the approach that they teach us which is to treat the patient as a whole person. Someone’s psychological health can be suffering because of poor physical health and visa versa, so it’s important to work on both, and to make sure that the treatments being discussed are actually feasible and reasonable for them to try to adhere to. (i.e. telling someone to “just lose weight” without working with them on strategies on how to do so in a safe and manageable way is just plain stupid.)