Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Would it be worth a shot to email this video link to all of the socalled ME/CFS specialists in the UK/USA? If we only persuade half a dozen to even watch it , it will at least start to get them thinking
@pine108kell
With regard to auto-immune diseases and infection, Multiple Sclerosis, which is very similar to ME/CFS, is an auto-immune disease (the immune system, of course, attacks the meylin - fatty sheaths - around the axons of the brain) with links to Epstein-Barr virus, among others. It's treated with anti-virals (amantadine) and interferon (betas), which is essential to fighting viral infections. While I haven't yet seen the video (I'm doing a naughty thing and skimming this article/comments while on the phone w/boyfriend at the moment! It's amazing I can even think/write coherently...or am I?), it sounds like Montoya views ME/CFS very much along the lines of MS.
My best friend has MS. We were diagnosed - with different diseases - at the same time. He was immediately placed on Avonex, a beta interferon, along with amantadine and nortriptyline (tricyclic antidepressant to help with sleep). While he has had a good chunk of damage to his cognitive skills (particularly unfortunate given that he is a PhD candidate), he's managed to adapt with the help of cognitive psychologists (they're only bad if they think they can cure you!) and occupational therapists and is slowly finishing his dissertation. Physically, you would never know he has MS. He works most of the day, 5 days a week. Goes to the gym each day. Went to the Middle East last year to do research. He drove down here to Portland from Seattle (a 3 hour drive) to help me move. While immune modulators and anti-virals have not cured him, he's "practically an Olympic athlete" in his words compared to me, who is mostly bedridden
If Montoya can give us the same options that MS patients have today, BRING IT ON!
pinekell - (I can use the bathroom on my own, make my own breakfast - not without going over my anaerobic threshold, however - but need help to take a bath, cannot drive, must limit use of my laptop in bed & can only read small portions at a time - despite being a PR member longer than almost anybody here, I've not reached the 100 post threshold because I can't post much - can only leave my apartment once a month to go to my dr's office to get my morphine script and my blood clotting time checked after developed blod clots in my lungs 5 years ago -- in other words, I'm seriously disabled).
although there is evidence that the risk of MS symptoms worsening is greater after acute viral illnesses
Im also interested in immunosupressants. Its totally clear to me that ME/CFS is having a huge impact on my immune system. I feel crap, but i dont get any colds, flu or anything. I feel like an indestructable super hero in a comic, but my weakness is that i am weak and ill all the time.
What with pregnant women often getting alot better while pregnant (while their immune system supresses itself) it seems a dead cert. to me.
I've been hearing such raves about this video that I feel moved to make a transcription of it (even though I haven't actually watched it myself yet!)
Does anyone know Dr. Montoya who could approach him for permission to make and post such a transcription?
one thing to remember about the difference between MS and ME is that in MS, they do not have PEM or the type of channelopathy where muscle weakness is progressive with use. In that regard, we are more like Myasthenia Gravis (which differs from other diseases, besides us which is like, in that the muscles become weaker with use).
However yes, with proper treatment and support, we should gain a lot of function and do a lot better. I suspect the SF-36 testing showing ME/CFS worse than most all other diseases is at least partly related to being totally (or almost totally, depending on the patient) untreated and generally without assitive devices or any other support.
What is the difference between MS and CFS? Research, research, research..MS gets about 135 millions a year in research, CFS gets 6 million.
Its stories like this that make me wonder why researchers aren't foaming at the mouth to get at this illness. What can cause such severe debility? Its a fascinating disease. I believe Montoya will be right and at some point we will get a sincere apology from the medical profession (although I would be happy with more funding at this point )
I have somebody I can ask about that. We really need to find a way to get this video into more doctors and researchers hands.
How long have you been ill?
Did you have any improvement in your ME/CFS when you got cold/flu?
Last December I spent the night (and most of the next day) in the hospital because of a possible "cardiac event." It took them forever to tease through all my co-morbid conditions to finally decide that no, I wasn't haven't having a heart attack. But what almost all of the physicians who saw me commented on was how surprising it was to see a 38-year-old woman with so many serious health conditions. What I thought -- and should have said! -- was "well, yeah, this is what happens when you leave someone with a seriously debilitating disease to rot in a bedroom with no treatment beyond pain relief."
And yeah, it be nice if my insurance (Medicaid) would pay for a damn wheelchair!
ME/CFS patients always wave around the 5000 articles (many of them psychogenically based) about CFS, but it's not all that impressive when compared to most other diseases. (AIDS, for example, has 178, 333 articles.)
Good Evening. Thank you, [unintelligible], for making possible this evening's [unintelligible].
Chronic Fatigue Syndrome is arguably one of the most controverted, misunderstood, misperceived fields in medicine today. Although it is feared that the health of millions of people have been compromised significantly by this disease, still in medicine we face situations where an extreme, even in our own medical community, disease is not believed that it is real, which is a shame.
But the one thing, there is one thing of anyone in this audience here, today, that I would like to have as a point to take home, of your family members, your friends, or yourself, is to not kid yourself--this is a real disease.
And what I would like to do tonight, is share with you the evolving understanding that for example, we have put together, what we tell you today may not be true tomorrow. But what we tell you today, hopefully, is better than what we had [unintelligible] or [unintelligible] yesterday. And it is evolving--it's changing.
But we have, a simple goal, is one day--one day--have CFS a history of the past. So we do want one day be able to conquer the disease and be able to bring relief finally to the many patients who are suffering. I do not have the timeframe for this, but, trust me, we are working hard at making that timeframe the shortest possible.