Could ME/CFS and Fibromyalgia Be Narcoleptic Spectrum Disorders?

J

Jaybee00

Senior Member (Voting Rights)
www.healthrising.org

Could ME/CFS and Fibromyalgia Be Narcoleptic Spectrum Disorders? - Health Rising

Could ME;/CFS and fibromyalgia be on the narcoleptic disease spectrum? After decades of work on these diseases, Dr. Perrino believes so...
www.healthrising.org

Perrino was 45 years old when something happened that changed his life. While researching a new sleep compound called Xyrem, his doctor, Neil Feldman, asked him to be a human guinea pig. Feldman was worried that Xyrem would cause the sleep in people with sleep apnea to collapse, not get better, and he wanted to test the drug on Perrino first.

Instead, the opposite happened. Perrino’s fatigue, sleepiness, brain fog, and depression disappeared; his energy returned as he made a near full recovery. He’s been on Xyrem ever since.

@Jonathan Edwards tagging you even though I know you are not the biggest Health Rising fan because you have mentioned potential similarities between narcolepsy/cataplexy and ME/CFS.
 
Cort is correct on pricing—generic oxybate is like $7000/month. There is a controlled release formula that is almost $200,000/month. Crazy.

LUMRYZ™ (sodium oxybate) | For Patients

The first and only FDA-approved once-at-bedtime treatment for cataplexy or excessive daytime sleepiness (EDS) in adults with narcolepsy. Please see LUMRYZ full PI, including BOXED Warning, and Medication Guide.
www.lumryz.com www.lumryz.com
 
IIRC there was quite a bit of interest in Xyrem for ME/CFS on Phoenix Rising, back in the day. A trial called SAFFE ('Slow-wave sleep and daytime functioning in chronic fatigue syndrome: effects of sodium oxybate') by Imperial College London was reported to be recruiting in 2015 but I can't find its results reported anywhere. This US government clinical trials site says it was completed in 2020. I found this interim report where the investigators (C. F Durant, D.J.Nutt, B.Puri, S.J.Wilson) said they were having trouble recruiting for potentially interesting reasons (that's a heck of a lot with sleep-disordered breathing but I don't know whether those patients had undergone the necessary Canadian consensus criteria screening at that stage):

SAFFE investigators said:
To date, recruitment for this study has been difficult. Over 200 patients have volunteered; with 20% excluded in initial stages as taking psychoactive medications. Of those progressing to screening, 30% have been found to have undiagnosed sleep disordered breathing and 11% have been found to have psychiatric comorbidity. Based on initial observations, there appears to be poor identification of sleep disorders in patients with CFS, possibly due to the multiple pathways for diagnosis and care, and the symptoms of both fatigue and daytime sleepiness in this condition.
Click to expand...

Can anyone find the results of the trial? They were only after 12 patients (with them getting the drug and a placebo at different times).

Here's a retrospective study of a bunch of cases where Xyrem was used on PwCFS.

People better at PubMed searches could probably come up with some better stuff.
 
Sasha said:
IIRC there was quite a bit of interest in Xyrem for ME/CFS on Phoenix Rising, back in the day. A trial called SAFFE ('Slow-wave sleep and daytime functioning in chronic fatigue syndrome: effects of sodium oxybate') by Imperial College London was reported to be recruiting in 2015 but I can't find its results reported anywhere. This US government clinical trials site says it was completed in 2020. I found this interim report where the investigators (C. F Durant, D.J.Nutt, B.Puri, S.J.Wilson) said they were having trouble recruiting for potentially interesting reasons (that's a heck of a lot with sleep-disordered breathing but I don't know whether those patients had undergone the necessary Canadian consensus criteria screening at that stage):



Can anyone find the results of the trial? They were only after 12 patients (with them getting the drug and a placebo at different times).

Here's a retrospective study of a bunch of cases where Xyrem was used on PwCFS.

People better at PubMed searches could probably come up with some better stuff.
Click to expand...
D.J. Nutt is Professor David Nutt, perhaps someone could contact him and ask about it?
 
I know of a person who has Me/Cfs and not narcolepsy was placed on Sodium Oxybate in the USA and was in a better state on it. They came to Australia. To get it approved in Australia it has to be ticked off by a board and then you have to pay about $600 every 10 days on standard doses. They approved it for that person based on the fact they were on it previously. We need a properly done trial.
 
Last edited:
Holinger said:
I know of a patient who has Me/Cfs and not narcolepsy was placed on Sodium Oxybate in the USA and was in a better state on it. They came to Australia. To get it approved in Australia it has to be ticked off by a board and then you have to pay about $600 every 10 days on standard doses. They approved it for that person based on the fact they were on it previously. We need a properly done trial.
Click to expand...
What does it help the patient with? How long have they been taking it, and how much?
 
You must log in or register to reply here.
Back
Top Bottom