What’s in the pipeline? Ongoing, registered, or planned clinical trials for ME/CFS

Erhem. I had published the rationale earlier that year, based on a hypothesis that involved 55 precisely defined interconnecting steps.
I knew exactly why it ought to work!!

 

My bad I thought that came later haha

 

https://twitter.com/user/status/1316157939795791872

 

Evelien and I compared funding and planned clinical trials for ME/CFS to other illnesses with a similar prevalence and disability such as multiple sclerosis and schizophrenia. The results were quite interesting so we decided to write a follop-up blog about it. https://mecfsskeptic.wordpress.com/...ding-comparison-is-me-cfs-getting-too-little/

Here's the Twitter summary:

https://twitter.com/user/status/1318106844402012161


2) The total number of interventional trials for ME/CFS since 2000, the start of the Clinicaltrials.gov database, is substantially lower than the number of trials registered for a comparable illness in a single year.

3) It is sometimes claimed that ME/CFS is receiving so little research funding because it’s mischaracterized as a psychiatric, not a biomedical illness. The results for schizophrenia cast doubt on that hypothesis.

4) In 2019 Schizophrenia, a case example of a psychiatric illness, had 17 times the amount of NIH funding and 17 times more clinical trials registered than ME/CFS. Being a psychiatric disease doesn’t necessarily hamper research funding.

5) You might think that schizophrenia gets more behavioral intervention studies and that multiple sclerosis has more drug and other intervention studies. The data doesn’t show this (the trend was even in the opposite direction).

6) For all three illnesses, behavioral interventions were extremely popular and comprised a third or more of all registered trials. For multiple sclerosis, there were trials on video gaming, art, Pilates, ballet etc.

7) In conclusion: based on NIH funding and registered trials on Clinicaltrials.gov, things do seem to be moving much faster for other diseases. For us, this was a cause for optimism as it means that things can move much quicker for ME/CFS as well.

 

It could be that the myths spread about ME/CFS (that it's a psychosomatic illness or that it can be successfully treated with GET/CBT) have less of an influence on disease funding than commonly assumed.

There are drugs for anxiety, depression and just about any other psychiatric disease in DSM-V. So I suspect that if there's a lead to study or tackle the underlying pathology of a common and debilitating illness, that researchers and drug companies would just jump on it, regardless of whether it's seen psychosomatic or not.

 

You're comparing apples and oranges I think. What is meant is that according to various models proposed by psychiatrists over the years, ME/CFS is mainly an imaginary disease. They never say imaginary but it's implied.

PS: edited for clarity.

 

I don't think I agree- those psychiatric models frequently mention that ME/CFS is a complex and debilitating illness.

The view that ME/CFS is an imaginary disease has been proposed by people like Edward Shorter but the cognitive-behavioural model behind GET/CBT, that is far more popular within academia, is more complex than that I believe.

 

It cannot be more obvious than therapists attempting to cure patients by making them abandon their belief to have an organic disease.

At no point will patients be told to do this. There won't be a direct confrontation of the patient's beliefs. Instead it's done by degrees and indirectly. Nudging patients towards seeing their illness as caused by stress, thinking patterns and behaviour. Getting them to stop reducing their activity levels in response to feeling worse. If patients are able to do this, the model predicts they will recover, which would demonstrate that the illness the patient believed they had was not actually so but very different.

After PACE the claims of recovery and imaginary illness seem to have diminished somewhat but the effects of 30 years of claiming ME was imaginary continue to linger.

 

In my opinion, the model may be more complex, but the perception of the vast majority of people will be along the lines of "CFS: it's about being tired all the time, and exercise and changing how you think about it cures it". So it's no surprise to me that there are so few researchers interested in it, and those who are interested are those that typically have a direct connection with someone with it, so they are more aware of the truth of the matter.

Whereas, with the examples of schizophrenia and multiple sclerosis, while they may have had a 'perception problem' themselves in the past, that largely has been left behind and they are seen as 'deserving' areas of research. I do think the perception of ME is improving slowly over time but that doesn't minimise how badly it has held us back previously, relative to other conditions, as evidenced by your research.

So it is about more than just being incorrectly labelled psychiatric (as is generally understood by that term) or not.

 

Might have to look into this further, but it seems that illnesses that are seen as behavioural and believed by some to be treatable or curable by behavioural interventions - depression, anxiety, ADD, bipolar disorder, PTSD, obesity, substance abuse etc. - are getting quite a lot of research funding and drug trials.

Other illnesses that are getting relatively little funding (based on NIH figures) are vulvodynia, interstitial cystitis, fibromyalgia, endometriosis, migraine etc.

I admit it's hard to compare because the disorders mentioned above are all very common compared to the latter. Also; anorexia seems like an example of an illness that is getting way too little research funding.

You can view the NIH's overview of categorical spending per disease category here: https://report.nih.gov/categorical_spending.aspx

 

Maya Dusenbery made this argument in her book "Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick"

I was able to read it and thought it was alright. It also goes into some of the problems with MUS. David Tuller did a good interview with her: https://www.berkeleywellness.com/he...-medical-symptoms-are-dismissed-all-your-head

 

I am reading a great book at the moment called the accidental scientist. All about how there has been a massive role of chance and luck in discovery. For example ancient horsemen used to not clean mould from underneath saddles as they said it helped heal wounds on horses' backs. A student studied that fact but got ignored for decades. It's astonishing stuff. At the very least it means we should all stay humble and open minded, and in another sense the pressure is off for researchers as they might as well try a load of random stuff and some of it might work! Better to be collaborative and look at the big picture. Having said that obviously mechanisms and deep characterisations will help and that is something money totally can acheive.