Why so little focus on Functional Disability and so much focus on “Symptoms”?

[Mij]

Yes. Ignoring the fact most those studies are using diagnostic criteria where many of the patients probably don’t have what we consider ME.

When they discover the pathophysiology/physiopathology of delayed PEM then we can call it what it is. I can't say the term ME describes what I have either.

 

[Yann04]

When they discover the pathophysiology/physiopathology of delayed PEM then we can call it what it is. I can't say the term ME describes what I have either.

My point wasn’t specifically about the name ME, more about the fact the Oxford criteria doesn’t have PEM.

 

[Yann04]

I'm not too sure on that. Those drugs are very inexpensive and hardly profitable. And some patients probably often spend a similar amount on supplements, where pharmaceuticals loose out on profit. I think an expensive biologic (like Efgartigimod which also requires regular use) would be much more profitable (the income for those can be tens of thousands per patient per year).

Think of Efgartigimod and BC007, two companies who launched trials in the hope of addressing a "root cause" (before even launching trials into conditions where there is more evidence of their drug being promising) with the hope of bringing a new product into a market where no treatments exist. The problem here was probably that they didn't do good enough research beforehand rather than anything else.

If you were a pharmaceutical company would you launch a drug trial into ME/CFS? The market may be large but on the basis of which evidence would you even conduct a trial? (I think the problem is more so that if a drug is already on the market even though it isn't very effective but which is profitable the incentive structure is messed up, but that doesn't apply to ME/CFS).

I doubt that drug companies have had a large influence on focus areas seen in ME/CFS (at least not directly).

Random but related

Goldman Sachs asks in biotech research report: ‘Is curing patients a sustainable business model?’

https://www.cnbc.com/2018/04/11/goldman-asks-is-curing-patients-a-sustainable-business-model.html

(this is from 2018)

 

[Arnie Pye]

I think the article about Goldman Sachs above was triggered by a company (that I can't remember the name of) advertising their successful cure of Hepatitis C. I'm sure I've read that it might be possible to eliminate Hepatitis C in the near future as a result, and that numbers of sufferers have already dramatically reduced.

I haven't read this thread because I'm always dubious about the word "Functional" (in the title) and what the person using it means by it. Doctors and patients don't seem to mean the same thing by the word.

In my kitchen I have a fridge. It works. It is functional.

In my body I have a heart which is still beating. It works. It is functional.

But if I reported a pain that a doctor couldn't find an obvious cause for they would tell me that was functional and they would mean that the problem is a psychological/mental one, not caused by anything physical. And they are unlikely to explain to me, the patient, what they mean by a symptom being functional. If they wrote a prescription for anything it would most likely be one for anti-depressants.

I'm basing my comments on my experience of being in that situation in the 1990s when a severe pain I had was described as "functional". There was no treatment offered of any kind. Luckily for me I had surgery which found and fixed the cause about 5 or 6 years later, accidentally. (The surgeon was looking for something else which he didn't find.)

So what is a "functional disability" in the sense it is used in the title of this thread?