Open Pilot Study: A Novel Transcranial Magnetic Stimulation Treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Sly Saint

Sly Saint

Senior Member (Voting Rights)
Volunteers needed for Research Study on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

The UCLA Neuromodulation division at the UCLA Semel Institute is currently seeking participants for a study to analyze how brain stimulation effects symptoms of a condition called Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Participants will receive daily brain stimulation treatments, complete mood surveys, and record up to three(3) brain activity recordings over the course of the study.



Qualifications:

• Are between the ages of 18 and 75

• Right-handed

• Diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome



Participation involves:

• Brain stimulation treatments prescribed once daily (Monday-Friday) for 30 visits

• Completion of up three (3) brain activity recordings

• Completion of weekly assessments about mood and mental well-being



Location : UCLA TMS Clinic at the Semel Institute

FOR MORE INFORMATION PLEASE CONTACT:

Nikita Vince-Cruz at (310) 825-4781 or email nvincecruz@mednet.ucla.edu

Posting Information
Release Date: December 03, 2021
Expiration Date: January 14, 2022

https://digest.dgsom.ucla.edu/diges...utm_campaign=DGSOM Weekly Digest (12/07/2021)
 
I don't understand this for 2 reasons:

1. Participants seem to need to be well enough to travel to the lab for treatment 5 days a week for 6 weeks, so that only can include those pwME who live close enough and are well enough to do this.

2. The outcome measures are mood and mental well being, so nothing to do with any of the core symptoms of ME.

I wonder whether the researchers know anything about ME/CFS
 
Trish said:
I don't understand this for 2 reasons:

1. Participants seem to need to be well enough to travel to the lab for treatment 5 days a week for 6 weeks, so that only can include those pwME who live close enough and are well enough to do this.

2. The outcome measures are mood and mental well being, so nothing to do with any of the core symptoms of ME.

I wonder whether the researchers know anything about ME/CFS
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And one has to be right handed. ?
 
Nikita Vince-Cruz's publications have so far focused on treating people with depression with this method: https://www.pubfacts.com/author/Nikita+Vince-Cruz

This is the short description I've found about her:

Nikita Vince-CruzResearch Manager
Niki received her bachelor of science degree from the University of California, San Diego. Her special interests include an emphasis on well-being and exploring technological solutions for treating mental health conditions.​
 
It's very likely not a study of ME.

If anyone feels inclined they can email N V-C and let her know people with ME know it's not.

She is associated with this clinic:

https://tmslosangeles.com/meet-the-team/

UCLA has been a leader in TMS treatment since the founding of our program 10 years ago. Our team of faculty experts, led by Andrew Leuchter, MD, are board-certified psychiatrists with specialized training in TMS as well as mood, anxiety, and other disorders occurring from childhood through late life. As part of the Semel Institute, we are pioneers in research on TMS and other forms of neuromodulation, ensuring that patients receive the latest and most advanced treatment available.
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Although her name doesn't show up she has done other research with team members from this clinic:

https://pubmed.ncbi.nlm.nih.gov/31199104/

Dorsolateral prefrontal γ-aminobutyric acid in patients with treatment-resistant depression after transcranial magnetic stimulation measured with magnetic resonance spectroscopy
Jennifer G. Levitt 1 , Guldamla Kalender 1 , Joseph O’Neill 1 , Joel P. Diaz 1 , Ian A. Cook 1 , Nathaniel Ginder 1 , David Krantz 1 , Michael J. Minzenberg 1 , Nikita Vince-Cruz 1 , Lydia D. Nguyen 1 , Jeffry R. Alger 1 , Andrew F. Leuchter 1


They seem blissfully unaware of anything regarding ME.
 
Trish said:
I don't understand this for 2 reasons:

1. Participants seem to need to be well enough to travel to the lab for treatment 5 days a week for 6 weeks, so that only can include those pwME who live close enough and are well enough to do this.

2. The outcome measures are mood and mental well being, so nothing to do with any of the core symptoms of ME.

I wonder whether the researchers know anything about ME/CFS
Click to expand...

I suspect they think of ME as a cousin of treatment-resistant depression and are exploring whether something similar to electroconvulsive therapy (i.e. “shock therapy”) can be applied, just toned down and re-branded to sound less unpleasant. All a bit Nurse Racthed and it would be great if there was simple way to lodge a complaint with the right regulatory body, at a minimum to compel the researchers to prove they fully understand ME/CFS - I'm not sure how this works in the US though.
 
Blunted curiosity led me to contact the recruitment director and inquire further. Nikita proved quite affable and hospitable to the inquiry. I pressed her regarding the study’s philosophical approach to ME and voiced concern regarding the discredited BPS model. She couldn’t divulge the consensus emanating from the research team as she didn’t directly influence the protocol.

Moreover, when I illuminated the irrationality of focusing efforts on mood, she seemed to intimate that the study’s principal aims would be fatigue, pain, sleep quality styled questionnaires. According to her recitation, the mood component sought to assess improvements in quality of life occasioned by a reduction in symptoms. She mentioned that ME can negatively impact one’s existence, and I did not contest that assertion!

Additionally, she gauged my interest in participating in research initiatives surrounding depressive disorders and chronic pain. I found this disconcerting as neither of these diagnoses fit my circumstances, nor did I mention them during our discourse. I would conjecture that these conditions could be deemed synonymous by some involved, though I have a paucity of direct evidence for this claim.
 
Barry said:
And then there are awkward people like me, who are left handed for some things and right handed for others. I use a knife and fork right handed, write right handed, but throw or kick a ball left handed/footed, use a cricket bat left handed, etc.
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i am also one of the awkward people mostly because of idiotic teachers in primary school insisting that i write with my right hand . i used to be adept at using tools with either hand due to limitations of space etc .
 
alktipping said:
i am also one of the awkward people mostly because of idiotic teachers in primary school insisting that i write with my right hand . i used to be adept at using tools with either hand due to limitations of space etc .
Click to expand...
Yes, I have sometimes pondered that the things I am right handed at are things I would have been 'taught' in infancy. I have the vaguest memory of being told to do things the right way round, but I'm not at all sure it is a genuine memory. I do wonder what effect that might have, if any, on later life.
 
rTMS is being studied in the ME/CFS and FM community in the US and is showing some effect but a lot more research required https://www.healthrising.org/blog/2021/04/22/chronic-fatigue-brain-stimulation-clinical-trial/https://www.healthrising.org/blog/2021/04/22/chronic-fatigue-brain-stimulation-clinical-trial/

rTMS for depressive disorders is confined to private practice in NZ as not shown the effectiveness to warrant use in public services. The handedness and delivering it to the dominant hemisphere improves efficacy. It is not without side effects. It is usually confined to people who can’t tolerate medication or do not want psychotherapy. It is costly. Disturbingly commercial organisations are developing home rTMS.




 
There is emerging grassroots discussion of harms of TMS. See the private facebook group VTAG (Victims of TMS Action Group). See also these articles at Mad in America:
I've been in ongoing contact with the author of these articles who also moderates VTAG. He has delved into the research and finds that TMS can cause electrical injury with lasting negative effects. Many clinics and technicians either deny or are completely unaware of the possibility of harm. Concerns after sessions are brushed off. The word "non-invasive" is used to allay concerns, even though the technique sends electrical pulses to multiple brain areas, sometimes over dozens of sessions.

Selected research:
https://tms-sideeffects.com/tms-articles/

The situation is parallel to concerns about certain prescription drugs such as SSRIs and benzodiazepines: questionable efficacy, discounting of harms, persuasive marketing, conflicts of interest, lack of understanding of the mechanism, and a skewed evidence base.
 
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