[0] https://www.s4me.info/threads/exploring-the-role-of-galectin...
The problem is that ME/CFS is similar in presentation to other conditions such as for example certain kinds of depression. The difference is that exercise is thought to help with those conditions and exacerbates ME/CFS. Thus there are two different groups of people, one who you are helping by encouraging them to exercise and one who you are harming. If you can't tell them apart the system is bound to hurt someone.
It's proven to be the case. A repeat cardiopulmonary exercise (2-day CPET) is currently the only widely replicated biomarker for ME/CFS. Only ME/CFS shows a reduction in performance and a lowering of ventilatory threshold on the second day. Anyone else (sedentary, cancer, heart or lung disease, MS, depression) will show an improvement. [1]
A study this year showed a striking effect looking at the metabolites in urine after exercising female ME patients vs sedentary healthy controls. The ME patients just did not excrete metabolites as the healthy controls did. [2]
"This indicates that ME/CFS patients have a general metabolic dysregulation that is part of their exercise intolerance and PEM in which altered metabolic excretion is a contributing factor."
There's also a very simple clinical discriminator between ME/CFS and depression. If you ask a depressed person what they would do if they were suddenly cured, their answer will be "Not sure, I don't know, I can't think of anything, nothing really." If you ask someone with ME/CFS the same question, the response would be "Go to the shops, drive my car, walk on the beach, see my friends... etc".
It's very easy to frame what doctors say like this, but in my experience at least that's not really what they're doing. A doctor is a classification machine - they take your symptoms as inputs and output a disease or a syndrome, hopefully with mitigation measures associated with it.
When my wife had long covid for 3 years and doctors couldn't find anything wrong with her a neurologist diagnosed her with a "functional neurological disorder" and suggested psychiatry. My wife felt dismissed and was really mad about it, but the reality is that some sets of symptoms are psychosomatic, and psychiatry can help, so if the neurologist saw 100 people with my wife's symptoms and made the same recommendation to them all, some of them would benefit (as opposed to her making no diagnosis and none of them benefiting)
It's heavily published on and widely accepted as valid by neurologists, but that does not make it true.
The concept with FND is that there is no identifiable structural pathology, but that the neural circuits are dysfunctional, and that this can be fixed with things like cognitive behavioural therapy. This is typically framed to the patient as "the hardware is completely OK, there's just a problem with the software." (As most of this audience would recognise there is very little overlap between how brains work and how computers work.)
However, more advanced imaging techniques, such as 7T MRI are now showing structural abnormalities in these patients, which is a pretty fundamental problem for the above hypothesis. An attempt to rationalise this by FND proponents is made here.[2]
A recent example involves a 10yo child who developed a movement disorder following Covid.[3] Typically these would be diagnosed as functional movement disorder [4][5][6] and psychological therapy advised. However this group showed that in fact it was due to a neuroimmune pathology, with auto-antibodies forming that targeted some portion of the basal ganglia. The patient recovered completely with immunosuppression.
[1] https://www.bmj.com/content/325/7378/1449
[2] https://neurosymptoms.org/en/faq-2/can-people-with-fnd-have-...
[3] https://link.springer.com/article/10.1007/s00415-023-11853-5
[4] https://movementdisorders.onlinelibrary.wiley.com/doi/10.100...
I'm not questioning whether he suffered from ME/CFS but mortality is not reported in the Stanford data or what I've heard described of the syndrome.
It's hard to wrap my head around ME/CFS as he has described it being causative of organ failure. Did something happen? Is this a consequence of the therapeutic he tried?
Organ failure in a 37 year old without a history of end-organ dysfunction or acutely inciting event like a toxicity is incredibly unusual.
Life-Threatening Malnutrition in Very Severe ME/CFS (2021)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8070213/
Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (2021)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8544443/
There are not many mortality studies and few ME patients have had comprehensive autopsies —
Mortality in patients with myalgic encephalomyelitis and chronic fatigue syndrome (2016)
https://www.tandfonline.com/doi/full/10.1080/21641846.2016.1...
Causes of Death Among Patients With Chronic Fatigue Syndrome (2007)
https://www.tandfonline.com/doi/abs/10.1080/0739933060080376...
Somewhat harrowing reading is Whitney Dafoe's account of becoming extremely severe —
Extremely Severe ME/CFS—A Personal Account (2021)
There is a huge discrepancy and a lot of detail missing between "developed Long-COVID symptoms such as brain fog, fatigue, muscle pain and shortness of breath" and "he suffered from multiple organ failures".
I tried searching but have not found anything (yes I know some death certificates list long-covid as a contributory cause in CDC data, but one can list anything on a death certificate). Does anyone have a source/case report explaining this or detailing a case?
(Please note I am not trying to start a political debate regarding COVID out of a man's obituary, I am genuinely curious if anyone has information about this as I've never heard a causative claim before)
https://www.nature.com/articles/s41577-023-00904-7
https://www.nature.com/articles/s41579-022-00846-2
https://www.frontiersin.org/articles/10.3389/fneur.2023.1090...
Mild ME/CFS is usually associated with around 50% reduction in daily functioning. Moderate will usually lead to people being housebound and intermittently bed-bound. Severe and very severe are associated with a level of suffering that is hard to imagine possible.
An example of someone becoming severe is PhysicsGirl - Dianna Cowern.
The associated severe dysautonomia means that people are unable to sit or stand and often they can not eat or digest. They may require intravenous nutrition. Regrettably there are cases where the disease has not been treated appropriately and young people have died as a result. A recent example is Maeve Boothby-O'Neill and her father Sean O'Neill wrote in The Times with an interview with Maeve's Mother by Dr David Tuller.
https://www.thetimes.co.uk/article/my-daughter-couldnt-be-sa...
https://www.codastory.com/waronscience/chronic-fatigue-syndr...
It might be hard to grok the need for this if you’ve never been in a tight spot while sailing or operating a watercraft with a crew - but having this distinction has probably saved thousands of bad incidents from happening.
This is why in the days of processed x-ray films, TV shows would more commonly hang a chest x-ray incorrectly[1], with the (patient's) "left" label on the left instead of the right. It's less common now that the example imaging is digital.
[1] https://screenrant.com/scrubs-xray-gag-joke-deeper-meaning/