Open Natelson patient recruitment, NYC, USA

[Jaybee00]

https://labs.icahn.mssm.edu/natelsonlab/research/

Mount Sinai Pain and Fatigue Study Center, NYC, USA

Multiple Studies


CENTER FUNDED GRANT: Patients with ME/CFS and Balance Problems
Many patients with ME/CFS have problems maintaining balance. This new study tests the individual patient for that problem and then applies a treatment — activation of the part that modulates balance via a battery-operated stimulator. The purpose of the study is to determine if this experimental treatment improves balance. If you are interested in participating in this study, please contact us either via email to info@painandfatigue.com or phone at 212-844-6665.


FEDERALLY FUNDED GRANT: MRI Imaging to Compare Chronic Fatigue Syndrome Occurring With or Without Prior Covid-19 Infection
Many COVID-19 survivors remain ill with symptoms such as fatigue and brain fog. The symptoms are indicative of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). In this project, we will do magnetic resonance imaging of the brain to compare the images between long-COVID-ME/CFS and classic ME/CFS patients, as well as to individuals not affected by ME/CFS. Participants will be asked to undergo eligibility screening, complete a MRI scan, and answer questionnaires. Participants will be paid $100 upon completing the study. Knowledge learned from this study will deepen our understanding of ME/CFS/long-COVID disease mechanisms, aid in ME/CFS diagnosis, inform treatment decisions, and inspire new treatment targets. If you experience long-COVID or ME/CFS, or are a healthy individual, and are interested in participating in this study, please call 212-844-6665 or sign up at https://forms.gle/1uW36fMfjrFuNATX8

FEDERALLY FUNDED GRANT: Use of Rocking Bed to Demonstrate Pathophysiologic Sleep Differences between Chronic Fatigue Syndrome with and without Co-existing Fibromyalgia.
The pattern of sleep differs for patients with CFS alone versus those who also have FM. While some researchers believe the two illnesses are the same, we have done many studies indicating they are different – with different underlying causes and different probable avenues to treatment. To further test this idea, we will study sleep during afternoon naps done at the MSSM Sleep Lab. One nap will be done on a regular bed while the second will be done on a bed that moves back and forth like a cradle. Our idea is that some but not all CFS patients will feel better after the nap on the rocking bed compared to healthy controls. If you are a patient, interested in participating in this study or if you know of a healthy person who does not take any medications, please call 212-844-6665.

If you have questions, call the Pain & Fatigue Study Center research staff at: 212-844-6665.

FEDERALLY FUNDED GRANT: To examine why post activity fatigue, also known as post-exertional malaise (PEM) occurs in patients with myalgic encephalomyelitis/chronic fatigue syndrome [CFS] and at what level.
Current thinking is two cardiac stress tests a day apart can be used to assess the common ME/CFS complaint of post-exertional malaise. Our government medical research agency, the NIH, has provided us funds to examine this link. One reason that exertion may trigger PEM might relate to reductions in blood volume which occur when a person has to rest. We are asking patients with ME/CFS as well as one healthy friend or relative to consider coming to Mount Sinai for testing. After we assure that you are either an ME/CFS patient or a healthy comparison person, we will determine your blood volume and then ask you to do two sequential cardiac stress tests. If your blood volume is reduced, you may get an infusion of saline designed to repair this deficit. Reimbursement for time and travel will be available. If you are interested in possibly participating in this study, please call us at 212-844-6665.

 

[NelliePledge]

Post activity fatigue also known as post exertional malaise……….

 

[ME/CFS Skeptic]

ativation of the part that modulates balance via a battery-operated stimulator.

Our idea is that some but not all CFS patients will feel better after the nap on the rocking bed compared to healthy controls.

One reason that exertion may trigger PEM might relate to reductions in blood volume which occur when a person has to rest.

Some rather wild ideas being tested here.

 

[Mij]

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6589349/

These differences in sleep architectures indicate that patients with CFS+FM exhibit an additional sleep-disrupting component to their disease not found in CFS only, supporting the idea that pathophysiological differences exist between CFS only and CFS+FM; such differences may mean that CFS+FM is a different illness from CFS without FM. We have recently received NIH funding to allow us to use a novel method to make this determination by non-pharma-cologically improving some elements of sleep. A report from Swiss researchers studied the sleep architecture of 10 young men during two 45 min naps – one on a normal bed and the other on a bed that moved back and forth like a cradle20 (while this is an oscillating movement, the authors called it “rocking” – a term I will continue to use here also). Sleep in the rocking bed condition was better than in the stable bed condition with shorter periods of light sleep, increases in N2 sleep accompanied by a higher density of sleep spindles, and evidence for improved deep sleep (significantly higher delta power throughout the nap). Because in our data, only the CFS+FM patients had disrupted sleep specifically in the pattern improved by the rocking bed, the hypothesis we will test with the newly available funding is that the rocking bed will improve the sleep disruption of the CFS+FM patients significantly more than it will for the sleep of the CFS only patients

 

[Medfeb]

Dr. Natelson uses Fukuda to diagnose ME/CFS...

From the Mancini paper - "ME/CFS was considered present if at least 1 life sphere criteria was impacted substantially and at least 4 symptoms were rated moderate or greater"

From a recent NIH webinar - a slide on how Dr. Natelson diagnoses ME/CFS. The life sphere criteria above are about substantial impairment in functioning.

So we won't know how many of the patients in these studies actually experienced PEM or unrefreshing sleep, both required by all other criteria.

 

[Kitty]

I hope they're not going to put the unbalanced ones in the rocking bed, because that is NOT going to go well...

 

[Art Vandelay]

There are some reports from patients who have seen Natelson that aren't encouraging. For example. And Another.

 

[Mij]

Vestibular disturbances:

https://pubmed.ncbi.nlm.nih.gov/29562557/

Interpretation: The major findings are that poor balance may be associated with poorer self-reported physical health. In addition, CFS patients seemed to rely preferentially on visual inputs, regardless of whether it was correct. The finding that vestibular function may be impaired in patients with CFS+FM but not in those with CFS alone suggests that the pathophysiology of CFS+FM may differ as has been suggested by some.

 

[Andy]

To examine why post activity fatigue, also known as post-exertional malaise (PEM)

Another researcher who doesn't seem to understand what PEM actually is.

MEAction are promoting the study, https://www.meaction.net/2023/08/14/mt-sinai-pem/