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

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)

 

And one has to be right handed. ?

 

That might be something to do with the fact that they will zap the left side of the brain. Maybe left handed people have a slightly different configuration.

 

We left handers live in a world of right handed oppression

https://en.wikipedia.org/wiki/Bias_against_left-handed_people

 

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.​

 

Two errors noticed, maybe due to those charged with putting it online?

"how brain stimulation effects symptoms" instead of "affects". (presumably an error)

"Completion of up three" instead of "up to three".

 

I suspect that (carefully?) excludes most ME patients, to be honest!

 

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/

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.

 

Maybe they saw that by a few minor changes in their procedures, they could qualify for ME research funding. That's likely to happen with other research projects: put out the sweet smell of money, and pesky bugs come around to feed...

 

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.

 

we already have a device we must find a way to profit from it . that is all this boils down to.

 

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.

 

After a cursory reading of this study of rTMS safety issues, I would not be a guinea pig.

https://www.sciencedirect.com/science/article/pii/S1388245720305149

The FDA has approved the therapy for severe medication-resistant depression and OCD (again, severe and resistant to medication). I guess they are looking for more diseases to treat, as only those two are covered by insurance.

 

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.

 

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 .

 

They were just trying to get you to move beyond those unhelpful handedness beliefs.

 

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/

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:

• Too Good to Be True: How TMS Damaged My Brain
  
• Can Transcranial Magnetic Stimulation (TMS) Hurt You?
• Toxic Marketing: The Business of Selling TMS

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.