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Comment by PaulKeeble | Hacker News Reader

Its not the only disease this has happened to either. ME/CFS has been railroaded by European governments that funded only psychological research despite numerous pathological findings and better theories of the disease, this prejudiced treatment started in the 1970s and persists to this day including the corruption of the PACE trial results which researchers tried to hide the data of.

Research fraud in medicine is alarmingly common.

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For a long time, fibromyalgia was only diagnosed by ruling out everything else. There was a lot of 'It's all in your head.' Last year they developed an actual blood test for it that detects the wonky immune system response.

Out of interest, do you have a link to a paper?

One infuriating thing about PACE is that even the fraudulent results only showed a 22% recovery rate.

For a disease as serious as ME/CFS, a treatment with a 22% recovery rate is far from good enough. Even if PACE stood up to scrutiny it wouldn’t have made sense to give up on finding better treatments.

I mean, 22% sounds pretty damn good if there are no long lasting negative side effects of being part of the remaining 78%.

Like, sure, shoot for 200% cure rate, but even a success rate of 1% cured of a previously unrecoverable situation is insanely informative.

(self reply) (obviously if the 22% number itself is bogus then you can't trust anything)

There’s money to be made; don’t let facts stand in the way of profits!

This argument gets invoked a lot when it comes to medical dishonesty, but I really don't think it applies in the case of ME/CFS. If we could find the pathology behind the condition, there is huge money to be made in pharmaceutical treatments. Just look at the enormous amount of money being made treating auto-immune illnesses with Humira/Skyrizi/Xeljanz/etc, treating diabetes with GLP-1 agonists and CGMs, and treating obesity with GLP-1 agonists (and depression before all that!). Sometimes treating the chronically ill is the most profitable option.

I agree, but will the money be made by the same people? Like, if a psychologists group stands to benefit from treating it they wouldn't reap the benefit of the pharma research. Kind of like how the alcohol industry lobbies against weed or other possible substitutes. Or the car companies buying out the rail roads and then shutting them down to prevent competition. There is just so much inefficiency from competing industries sabotaging each other. You are also making a leap that understanding the cause is physiological means that there is a drug you could sell and not cost billions of dollars to get to market without risk. I always wonder about the PReP drugs for treating AIDS was really the best outcome instead of aiming for the cure. Definitely tradeoffs with a lot of money one way or another.

I think that's reasonable. I think there's definitely an economy-wide bias by vested interests against disruption, which gets us stuck in local maxima, sometimes for centuries.

The psychologist lobby is not as powerful as you seem to think. Pharmaceutical companies have brought numerous drugs to market that have proven to be more effective than talk therapy for certain serious chronic mental health conditions.

ME/CFS shows up as immune system dysfunction and for most people is likely downstream from dysautonomia. Given the huge overlap of people with long covid and hEDS, and that long covid presents as dysautonomia, the math likely works out that most people with ME/CFS actually have hEDS. It’s massively underdiagnosed. It’s likely one of many TNXB SNPs, these are overlooked for a few main reasons - it’s considered too common for a rare condition and it’s hard to sequence and only detectable with modern high quality deep WGS.

The other thing is that GLP-1As actually do appear to help with autoimmune conditions and has been, in my case and in the case of many others, one of the most effective medications for treating ME/CFS.

I wish it was a lack of a profit motive that caused medical researchers to be so off base but it appears what is more likely that they’re not very good with stats, as being good at stats would get in the way of all the ‘accidental’ p-hacking they’re so addicted to.

Edit: Added an email to my hacker news user details

Could you drop a form of contact? I have some questions about your knowledge of MECFS (especially regarding your comment about test cyp. & hgh for CCI)

Most of us (myself included) are not medical doctors specialized in this field. Could you please expand your acronyms? I only know of CFS (if it's the same one) because a cousin has it.

Sure,

  ME/CFS: Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
  hEDS: Hypermobile Ehlers Danlos syndrome
  TNXB: A gene for making the tenascin-X protein, it's one of the RCCX (Receptor of Complement component 4) gene cluster genes.
  SNPs: Single nucleotide polymorphisms
  WGS: Whole Genome Sequencing

hEDS, hypermobile Ehlers-Danlos syndrome, a joint problem with co-occurring immune system problems, sometimes caused by defects in the TNXB gene https://duckduckgo.com/?q=hEDS+hypermobile+Ehlers-Danlos+syn...

Myalgic encephalomyelitis/chronic fatigue syndrome https://en.wikipedia.org/wiki/Myalgic_encephalomyelitis/chro...

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