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

I agree fully - where's the evidence to support the statement?

A thought occurs that Jose Montoya (before he exited stage) gave a presentation in which he talked about patients having walked the Rockies (mountains) and similar fetes ---. So maybe, in the way that a camel is a horse designed by a committee, they feel that there's a need to emphasise that people with ME/CFS were high achievers. As I type this I'm aware that this line of thought makes no sense --- there is no objective evidence to support it --- they shouldn't be pandering to the frog boilers --- they should be getting on with research.

 

https://www.youtube.com/watch?v=6NlQFIpVdKY

The neutrophil study

 

https://twitter.com/user/status/1664673380153303042


https://twitter.com/user/status/1664682282307682304

 

I keep thinking that the spontaneous recovery was n=1, the woman that he has mentioned before who worked in his group who wrote computer apps from her bed, who had MECFS for 6 years. Would be encouraging if the n>1.

 

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

Ron Davis talk at 2:55

Again mentions that up to half of MECFS patients may also have MS.

BH4, which is low in MECFS patients is difficult to measure accurately in the lab because it degrades (oxidizes) very rapidly. Whitney qualified to receive Kuvan, a synthetic BH4 due to his low levels.

Also mentions that a specific probiotic has helped patients (see below) but it does not affect the BH4 pathway.



mod note: Ron Davis was one of the speakers on this webinar.
The webinar series, including this one, are posted on the NIH news thread

 

BTW the probiotic that he mentioned that helped some people is made by Biogaia. I am unable to insert Amazon link for some reason—maybe someone else could help.

 

Looks like it's also available on ebay:

https://www.ebay.co.uk/sch/i.html?_from=R40&_nkw=biogaia+gastrus&_sacat=0&_blrs=spell_auto_correct

 

The NIH should not be platforming this stuff.

 

The claim that up to half of ME/CFS patients may also have MS. Is this not an irresponsible claim?

 

I agree that it’s a very questionable claim, but who deserves a platform if Ron Davis doesn’t? Scientists/academics are flawed human beings, and in the course of their research will make some misleading assertions. What matters is the broader quality of their work

 

I don't think Davis ever made such a claim. I might be wrong this time, but previously when patients were making the claim that half of ME/CFS patients have MS, the basis for that was that Davis had said that they are finding antibodies to MBP in half of their ME/CFS samples (see also the discussion here). That is an entirely different statement. It isn't even clear whether these antibodies play any role in MS and they are commonly found in healthy controls as well.

If Davis indeed said half of ME/CFS patients have MS than that's extremely irresponsible pseudoscience and the NIH shouldn't be platforming such talks, but based on previous events I heavily doubt it. What I'm more worried about is Davis focusing on things because he believes they play a role in MS when there isn't even evidence that they actually play any role in MS.

Edit: Trish watched the talk and this time indeed one of the slides indeed says "It appears that about 50% patients have both MS and ME/CFS". However, that statements seems to be based on the MBP experiments (which very possibly say absolutely nothing), rather anything related to an actual diagnosis or actual markers. It appears that he wanted to raise the point that it's possible to have both diseases and that there's potentially some underlying overlap.

 

There probably are some patients with both as there were patients who responded massively to copaxone (well at least one that I know of). Maybe it depends on how plastic or elastic the definition of MS is?

Janet Dafoe said that they are about to release an explainer video on this topic.

 

Even after decades of research there no such thing as a blood marker for MS exists (and those things that some believe to play an important role such as sNfL and sGFAP are completely different to his experiments from what I can tell), so what they are detecting in their experiments can a priori never be a marker for MS (at least from what I’ve understood).

I don’t know enough on how plastic or elastic a definition of MS could be, but I think the only reasonable definition would be something along the lines of “you have MS if you meet the diagnostic criteria for MS (which currently revolve about detecting CNS damages via imaging and ruling out other causes)“. Of course this is a highly imperfect definition since it revolves around detecting the damage MS causes rather than for example more underlying mechanisms, but it’s probably currently the only sensible thing to do, at least from what I can tell.

I now watched the video and he addresses the fact that doctors seem to say it’s not possible to have ME/CFS and MS. So maybe he just wanted to provide some extra context, that it’s indeed possible to have both and that there’s many similarities between the diseases and it's also possible for them to share underlying aetiologies. Unless one is stating a conjecture, statements without evidence basis are probably never helpful, but as Trish points out he’s mainly solution oriented and unless patients misinterpret this statement it probably has little relevance. I hope the explainer video makes these statements clearer.

I think the Copaxone statement could be interesting and it's the first time I've heard about this, but at the same time such anecdotal stories also pale in comparison to the rigorous double blinded and placebo controlled Rituximab data showing that Rituximab works in MS but doesn’t in ME/CFS.

 

Four different types of MS

No mention of delayed post-exertional malaise.

 

Here is the video explaining the MS finding—also posted in the catalytic antibody paper thread.

https://www.youtube.com/watch?v=Hx_FNcLBZF0

 

50% of ME/CFS patients don't have MS. If they did, half of us would ultimately be dying of untreated MS.