Dr Ron Davis - Updates on ME/CFS research - September 2019 onwards

https://solvecfs.org/research-and-r...grants/meet-the-researchers/vincent-lombardi/

Are there any publications out on this study yet? That should shed at least some light on the use of the specific drug Davis was talking about.

 

https://twitter.com/user/status/1829436311020699831


Small thread about it with some comments from an MIT researcher. In response to what Davis was saying and what Ely David is doing with JAK STAT inhibitors.

 

Interesting. I hope this other study gets funded. But it does really frustate me that Davis himself can't get trials funded. I don't believe he is our annointed saviour like a lot of pwME but he is incredibly intelligent and driven, and the NIH refusing to fund his lab for the last decade plus is outrageous.

 

You'd think Open Medicine Foundation might fund some of the Phase I/II trials. Is there some reason why they don't?

 

That is a very good question. Especially with abilify, Davis had a study of that ready to go and the NIH shot it down. I don't know where they're currently at with all the itaconate shunt stuff, perhaps they are not ready to do a study yet. JAK inhibitors obviously have serious side effects but you'd think at this point they might at least want to do a pilot study?

It also really frustrates me how they never publish anything.

 

Without the impetus for a drug coming from a meanginful mechanistic study of pwME there isn't really much that anybody can say

 

On Reddit someone linked to a Robert Phair comment on Health Rising where he indicates the Australian patient Ron references was corresponding with him, Robert Phair. The patient had gone to Japan to seek Filgotinib, and got better within three days.

IN this webinar Phair also cites an anecdote about de Meirleir improving six patienst with Filgotinib. So at least it's not just one patient. But the quality of data is not high (yet).

https://www.youtube.com/watch?v=Y5AvIGvjyO4

Still, if science can come to understand why it works when it works, and why not when it doesn't, that could be very helpful. So in my view a trial would be worthwhile.

 

Absolutely. Looking at the safety information in BNF, it's not something you'd take because somebody said it might work, possibly.

Spoiler

Important safety information For filgotinib

MHRA/CHM advice: Janus kinase (JAK) inhibitors: new measures to reduce risks of major cardiovascular events, malignancy, venous thromboembolism, serious infections and increased mortality (April 2023)

In 2022, the EMA conducted a review of all JAK inhibitors indicated for chronic inflammatory diseases and concluded that the risks associated with the use of tofacitinib could be considered a class effect (see Important safety information in tofacitinib). Following a further review by the MHRA, some existing warnings for tofacitinib have been updated and implemented for all JAK inhibitors included in the review, such as filgotinib.

Healthcare professionals are advised to:

• avoid use in patients aged 65 years or older, in patients who are current or past long-time smokers, and in patients with other cardiovascular disease or malignancy risk factors, unless there are no suitable alternatives;
• use with caution in patients with risk factors for venous thromboembolism;
• use lower doses in patients with risk factors, where applicable;
• periodically examine all patients' skin for malignancy;
• inform patients and their carers of these risks, and the signs and symptoms that warrant urgent medical attention.

 

De Meilier’s input unlikely to be reliable. Reports of his profiting off patients, and wrong headed theories, and inappropriate treatments have abounded for years. Curious that he is treated as reliable by OMF etc.

 

This was the rationale behind the LDA trial that was rejected (with the infamous 'its depression, give them antidepressants' aside to Ron). Why does it work for some people and what happens in the body when it stops working. Could possibly have taught us a lot.

Yeah as a former smoker I would be absolutely bricking myself if I had to take this but the risk would 100% be better than severe ME if it had been shown to have an effect in a well designed trial. If they have a solid rationale for why it might work and a case study of someone responding (plus KDM's dubious info) a small trial might not be a bad idea. As long as people are fully informed of the risks.