ME/CFS Brain Stimulation Clinical Trial begins at UCLA - Health Rising 4/22/21

[Mary]

This looks quite interesting! Cort has done it again:

Novel Chronic Fatigue Syndrome (ME/CFS) Brain Stimulation Clinical Trial Begins - Health Rising

 

[5vforest]

I try to keep an open mind but I fail to see how this trial will lead to effective treatment, or any better understanding of this disease.

 

[Hip]

Interesting. It appears that there have been a couple of recent studies (here and here) which demonstrated that repetitive transcranial magnetic stimulation (rTMS) can reduce the fatigue in ME/CFS.

In one study they found that patients found the benefits were still present 2 weeks after their 6-8 sessions of rTMS.

rTMS is a system which precisely targets specific areas of the brain, so the results of a study will depend on which area of the brain they chose to stimulate.

Unfortunately rTMS machines are relatively complex and expensive, so unlike do-it-yourself at home electrical brain stimulation techniques like transcranial direct current stimulation (tDCS), rTMS sessions will always involve a hospital or clinic visit.

A case study on a single ME/CFS patient found a benefit for home tDCS.

 

[Mary]

I try to keep an open mind but I fail to see how this trial will lead to effective treatment, or any better understanding of this disease.

I think this explains a bit how it might help people with ME/CFS:

TMS can also be used to study the brain, and that’s how it’s mostly been used in ME/CFS. Several ME/CFS studies in the early to mid 2000s found reduced motor cortex excitability. That suggested that at least part of the fatigue in ME/CFS was “central”; i.e. it emanated from the brain, and that ME/CFS brains may be having difficulty activating the muscles during exercise.

Except for a small Japanese case series, and a small open label trial, rTMS has been little studied as a treatment option in ME/CFS. The case series, though, concluded that, “In most of the patients, treatment resulted in an improvement of fatigue symptoms”, and the open label trial found that both people with mild/moderate or severe cases of ME/CFS significantly benefitted. It called rTMS “a novel therapeutic intervention for ME patients” and concluded that:

“rTMS can improve fatigue symptom in ME patients regardless of (the )baseline severity of (the) fatigue symptoms”.​

I think it does sound too good to be true, but maybe they'll learn something that can be helpful. We won't know if this is never tried.

 

[Jackb23]

Had this done in 2016 and then again in 2017(this time on the right dlpfc, low frequency) obviously that’s just one experience, but I hope it goes much better for those in this study.

 

[Rufous McKinney]

I hope it goes much better for those in this study.

I got rather excited today reading about this study in the Solve ME newsletter. Funny- I have no recollection that I read all this last April. (my likes provide a record of what i forgot already).

I am a firm believer in body energetics, meridians, using magnets, needles, and chinese medicine.

I think this type of possible treatment is exceptionally exciting. I don't have huge confidence in: a pill will fix this.

Maybe both can.

And again I loved reading- the study will involved 20 people, and is a proof of concept. So of course an aCTUAL double blind placebo study- will have to be done later. ANd then after they do one of those, they'll tell us they have do do more confirming double blind placebo studies.

So meanwhile, I'm taping on some magnets.

 

[Apollonia]

I signed up to take part in this study, but I don't think I will be able to take part, as no anti-depressants are allowed, even in the tiny doses I take (for sleep and pain, not for depression), and I found after a few nights I simply could not do without it.

I may try instead to have the treatment itself, provided insurance is willing.

 

[Rufous McKinney]

but I don't think I will be able to take part, as no anti-depressants are allowed, even in the tiny doses I take

thats too bad, how frustrating.....

I may try instead to have the treatment itself, provided insurance is willing.

Is there anywhere to obtain the treatment? it sure sounds tempting....

 

[Martin aka paused||M.E.]

thats too bad, how frustrating.....



Is there anywhere to obtain the treatment? it sure sounds tempting....

I could only imagine that it’s the same like in Germany where you can obtain this treatment when antidepressants fail to work. Otherwise insurance won’t cover it here.

I tried a tDCS for some time at home. That didn’t change anything. But perhaps it was not the best device.

 

[Lieselotte]

I had recently (Dec 2020-Feb 2021) done TMS for depression. I went 4x per week for the TMS sessions.

At the conclusion of the sessions, I would say that it helped my depression somewhere around 30%. Part of that could have been that I had somewhere to go and be for a little while everyday to get me out of my funk. I became friends with the technician, and it was something to look forward to. (Also btw told him all about ME/CFS because more people need to know!)

So it possibly helped a little with depression, but I didn't notice any major bumps in energy or pain relief. Mind you, I have mild CFS and went through no crashes during that time. Might have been more interesting to see any effects if I was in a crash.

Apparently for some people TMS helps a LOT with their depression, but some not so much (like lucky me). So TMS will likely be one of those treatments that if it works for ME, it will only work for some.

 

[Apollonia]

thats too bad, how frustrating.....

Semel Institute for Neuroscience and Human Behavior
University of California Los Angeles

The Suthana Lab in the Semel Institute is running the clinical trial. You get assigned randomly to the control group or the treatment group, but anyone who lands in the control group is offered the real deal at the end of the trial. The trial itself is quite intensive: basic medical assessment with info on medications and diagnoses; a three hour psychological assessment focussing on memory; then 15 sessions over three weeks, each taking about an hour to an hour and a half; a final psych assessment. There's a small honorarium and they give valet parking, which is cool, given the price of parking in Westwood. Normally husband and I travel in by bus, but that's out for the duration! If you are interested in the trial, contact Sonja Hiller (SHiller@mednet.ucla.edu).

I will find out whether I can get the treatment anyway, as it looks like I can't manage without my teensy-weensy dosy of Doxepin, and I will post any updates.