(I haven't read this myself)
http://microbeminded.com/2017/10/18/a-letter-to-the-mecfs-research-community-doctors-patients/
http://microbeminded.com/2017/10/18/a-letter-to-the-mecfs-research-community-doctors-patients/
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Hypothesis piece by Amy Proal, a microbiologist with ME/CFS
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frederic83
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Amy Proal, I know this name... What's she the woman promoting Marshall's protocol, like a few years ago ?
Correct me if I'm wrong, but her conclusion seems to be that early intervention is critical. But intervention with what is my question. She seems not to think immune suppression is the answer. Doesn't seem to favour RTX.
And the other point she's making is that in time the cascading infections just overwhelm the immune system, (and she doesn't seem to suggest that it can be helped. )
Now, in our family member, strep was frequent. Then cdifficile was contracted in hospital after a surgical wound infection which required several antibiotics. And then ME descended.
I wonder if other folks here suffered infections in childhood or early adulthood.
Edit: but then I myself used penicillin monthly for ear infections until age 25, and did not contract this monstrous illness.
And the other point she's making is that in time the cascading infections just overwhelm the immune system, (and she doesn't seem to suggest that it can be helped. )
Now, in our family member, strep was frequent. Then cdifficile was contracted in hospital after a surgical wound infection which required several antibiotics. And then ME descended.
I wonder if other folks here suffered infections in childhood or early adulthood.
Edit: but then I myself used penicillin monthly for ear infections until age 25, and did not contract this monstrous illness.
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Not clear what you are asking What ? about inester7?
Is there something unclear about my post?
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I read the whole thing and I was like.. what? I didn't understand like the point / conclusion., Treat early as an infectious disease? We would be cured since this has been tried. I think this is over simplistic.
lansbergen
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Early intervention is critical is probably correct.
Too long for me to read, but the first bit reminds me of Occam's razor, not that i completely agree with Occam but this seems overly complicated and about as likely as some of the out there theories of ME/CFS which i wish i had bookmarked to post here, from gene expression as being the cause or there was one about electrical gating or something. That said i can't read the whole thing, its too long so i might be missing a lot. And the early intervention or bust does not make much sense, it would hold more water for something like Alzheimers which causes permanent wide spread brain damage
That said we should keep an open mind but not get wedded to a theory and exclude other theories that could be the disease mechanism.
That said we should keep an open mind but not get wedded to a theory and exclude other theories that could be the disease mechanism.
lansbergen
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Would that not depend on the kind of intervention?
My point is if there is irreversible damage then its reasonable to say something can only be treated well at the beginning, many experts have said (including Dr Davis) that there doesn't seem to be much damage thats permanent in ME/CFS. Also some people do recover spontaneously and/or have significant improvement (even if temporary it does happen), which also suggests treatment is possible if we can find the disease mechanism and a chemical to modify it.
lansbergen
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If there would be irreversible damage I could not have improved so much.
My point is the sooner treatment starts the less damage.
If I had known what I know now when I was first infected I would not have become so severe.
My point is the sooner treatment starts the less damage.
If I had known what I know now when I was first infected I would not have become so severe.
ljimbo423
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I agree 100% with everything you have said here. I was mostly bedridden for several years and slept 10-12 hours a day.
Now I rarely even take naps, sleep about 8 hours a night and continue to improve. So there doesn't seem to be permanent damage.
The paper seems to say, from what could gather. That repeated infections weaken the immune system, causing already acquired pathogens to become reactivated.
This causes more symptoms, a weaker immune system, dysbiosis, a self feeding cycle and cfs.
This theory fits my path into cfs. I've had many, many infections over the course of my life. For many years I use to get bacterial bronchitis once or twice every year. I also had many infections as a kid growing up.
Jim
lansbergen
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I am the opposite. I was very healthy. When everybody around me fell ill with for instanes the flu I could stay on my feet till one of the others was well enough to take over and I go to bed.
ljimbo423
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lansbergen
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I got what seemed the worst flu ever and never got back to my normal health
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Flu or cold .... with fever
As with lansbergen, I was very healthy, and seemed to have a better than average immune system. I did, in retrospect, have a slight type IV sensitivity to oranges since at least my early 20's, but just a trivial response. Then I had a tetanus booster, and sometime after that the type IV sensitivity became crippling, and spread to most foods. The type IV reaction stopped after a moderate case of food poisoning (changed microbiome?), but the symptoms remained, and I eventually recognized them as ME/CFS.
My microbiome did seem to be involved, but that was after the tetanus booster, so my example seems to indicate that it's triggered by an inflammatory event, which might cause dysbiosis. I wouldn't be surprised if some bacteria or virus changes state after an inflammatory event and sustains that state. It may not be the answer, but it's a good thought for researchers to keep in mind when thinking of 'why is that happening?' for whatever abnormality they're looking at.
My microbiome did seem to be involved, but that was after the tetanus booster, so my example seems to indicate that it's triggered by an inflammatory event, which might cause dysbiosis. I wouldn't be surprised if some bacteria or virus changes state after an inflammatory event and sustains that state. It may not be the answer, but it's a good thought for researchers to keep in mind when thinking of 'why is that happening?' for whatever abnormality they're looking at.
Indeed. Ms. Proal claimed she was cured years ago, by following the infamous 'Marshall Protocol', drummed up by Trevor Marshall (who you'll see is a co-author on almost every paper she's published, many of which were first published in a journal THEY created because no one else would publish it -- the Autoimmunity Review.
Marshall himself made the rounds more than a dozen years ago, claiming that ME/CFS, Fibro, etc., could be cured within one to two years, by taking a specific antibiotic, along with benicar (a antihypertensive), and strict, strict, insanely strict AVOIDANCE of vitamin D, to the point where patients were instructed to wear sunglasses even indoors(!), and long sleeve shirts, jackets, etc. Doctors were even instructed to keep the lights low in their offices.
Five-six years later, Marshall & Co still claimed to be cured, but they were still taking the abx combo and avoiding not only sunlight, but even bright cloudy days.
Google the Marshall Protocol and you'll find horror stories, but I can tell you that back in 2005-2006 or so there were about a half dozen in our local support group that tried it, and every single one had to stop. One almost died from kidney failure. Very, very dangerous. And the local doc that was promoting it was disciplined by the state 6-7 years ago as well. I don't think she lost her license, but nearly so.
Proal/Marshall & Co claim that vitamin D suppresses the immune system, and that's why we -- and people with almost any disease -- are sick. So we must avoid vitamin D and avoid the sun or even daylight, like the plague.
First of all, vitamin D regulates or modulates the immune system, it doesn't suppress it. There are multiple studies that show this fact. If Proal and Marshall were correct, then people like Katrina Hansen and Whitney Dafoe and thousands of others who are housebound and can't tolerate light would be getting better, not WORSE. It just defies common sense...
They also claim that benicar, a med for lowering blood pressure, is a VDR agonist -- and in their words, it 'stimulates the immune system'. Again, a google search will show they are the only group (The Autoimmunity Research Foundation) that makes this claim. The drug's manufacturer doesn't even claim this, and if it were indeed true, don't you think they would?
Many if not perhaps a majority of ME/CFS patients suffer from neurally mediated hypotension, and/or in general have already low blood pressure to begin with. How in the world would taking benicar make that better?
And then there's benicar's 'side effects', which sound exactly like many of the symptoms we suffer from: dizziness, lightheadedness, bronchitis, back pain, joint or muscle pain, stomach pain, nausea, weakness, flu-like symptoms, sinus infections, chest pain, cough, and vertigo.
But it's the nasty side effects that almost killed 2 patients that I know:
hyperkalemia, renal (kidney) failure, and muscle tissue breakdown.
Mark London wrote a great piece back in 2009 taking apart their hypothesis:
https://stuff.mit.edu/people/london/universe.htm
IMO, Ms. Proal's "letter", on her latest website, is just another sad attempt to resurrect this dangerous and nonsensical protocol.
Early intervention is of course very helpful, but I know a woman in our local support group who was sick for 16-17 years, was housebound for five of those years and bedridden for two, yet recovered and went back to school at age 42 in 2008. The last photo I saw of her was from 2016, and she looked fine. I'm going to try and contact her to see how she's doing...
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