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@deleder2k thanks. I imagine the Fluge paper is about to come out? Why am I nervous? It’s associated with psoriasis. https://www.frontiersin.org/articles/10.3389/fimmu.2018.00954/full

This abstract looks pretty worthless. They define three things, "PPS", "ME" and "CFS" in the background section. Then, under results, they compared "ME/CFS", which wasn't defined in the background section to PPS. Wow, this journal article must have undergone severe peer review. Sometimes it...

In general, to me, this thread does not seem to be very useful or rewarding. It seems to be degenerating into some type of tribal dispute. If you don't want the CCI operation, then please, by all means, don't have one. If people want the operation with INFORMED CONSENT, then power to them...

so far, more like the lead, arsenic, plutonium month.....

nope, no golden month for me in November....I could always hope that it hits in late November.....

I started having medium, not mild, sleep apnea maybe a year prior to the point of no return of my MECFS. I hadn’t had any apnea prior to this. I got a CPAP machine but I didn’t feel any better after using it, so I stopped using it. I believe the underlying MECFS causes the sleep disturbances...

https://www.nytimes.com/2019/11/02/opinion/sunday/pelosi-drug-prices-plan.html?action=click&module=Opinion&pgtype=Homepage

@Badpack Comhaire posts here under the name “ME/CFS”. You could @ him if you have questions. Meldonium is available online... not so expensive.

Thanks for posting. I know many are negative on Comhaire’s work, but at least he is investigating some potential treatment options.

https://www.washingtonpost.com/national/health-science/in-hunt-for-new-treatments-nonprofits-are-acting-like-venture-capitalists/2015/07/02/c6094578-19b8-11e5-93b7-5eddc056ad8a_story.html This is the article that is linked to in the above article.... these guys were able to raise a ton of money...

Congrats...but it took 30 years from ID’ing genetic defect to the development of a robust treatment. https://www.washingtonpost.com/health/2019/10/31/long-awaited-cystic-fibrosis-drug-could-turn-deadly-disease-into-manageable-condition/

Merged thread I'm Broken, Britain: The DWP tells us to self-censor our own disability https://www.politics.co.uk/comment-analysis/2019/10/28/i-m-broken-britain-the-dwp-tells-us-to-self-censor-our-own-d has ME

No need to open and replace anymore. https://www.medicalnewstoday.com/articles/241215.php

I agree that this may be an important paper. I am just not optimistic that there will be any way of fixing this. The track record on treatments for other neurological diseases is not so good.

Hmmm. They don’t suggest any treatments in the paper.

Did it work for/help the patient? No sense doing a cost/benefit if we don’t know if it worked....

Prognosis

For me, I have fatigue per se. This along with brain fog are my worst 2 symptoms. For me, fatigue is not a diversion, it is a real issue.

MECFS research should be able to leverage the huge funding for MS, especially, for symptom treatments. MS and MECFS both have fatigue and cognitive dysfunction as major symptoms. If a treatment works for these symptoms in MS, then likely it will work for these same symptoms in MECFS.

So the big European MS meeting just finished a couple of days ago. The scientific program book is 131 pages long for a three day meeting!! https://www.professionalabstracts.com/ectrims2019/programme-ectrims2019.pdf Why is there so much more MS research than MECFS research? Are there really...