ME/CFS and MS

Judee

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Very good. Only got halfway through reading it but will try to come back and finish. Also may try to print out to hand people who ask me about ME.
 

heapsreal

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There seems to be some sort of relationship with ebv and MS, maybe the similarity with MS and ME. I was on an MS forum a few years back, i will kindly say they arent as educated about their illness as ME people are but then they probably dont need to be maybe?? Anyway i asked if anyone had improved on antivirals like valtrex or famvir. There were a couple of MS people who had tried them and noticed positive results.
I guess we are all under the umbrella of neuroimmune diseases??
 

Learner1

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A Dr. Kevin Lee just posted this older article on twitter: a comparison of ME and MS. Perhaps it was noted here before, if so, then moderators please remove. Thanks.

https://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-11-205
Looks like this is from 2013, when we didn't know ME/CFS was a neuroimmune illness....:rolleyes:

But, it is interesting to revisit, especially when recent news has linked MS to EBV.

"Frontiers | Epstein-Barr Virus and Multiple Sclerosis | Immunology" https://www.frontiersin.org/articles/10.3389/fimmu.2020.587078/full

"Study of Patients With Early MS Finds Universal Positivity to Epstein-Barr Antibodies" https://www.ajmc.com/view/study-of-...niversal-positivity-to-epsteinbarr-antibodies
 

perrier

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Looks like this is from 2013, when we didn't know ME/CFS was a neuroimmune illness....:rolleyes:

But, it is interesting to revisit, especially when recent news has linked MS to EBV.

"Frontiers | Epstein-Barr Virus and Multiple Sclerosis | Immunology" https://www.frontiersin.org/articles/10.3389/fimmu.2020.587078/full

"Study of Patients With Early MS Finds Universal Positivity to Epstein-Barr Antibodies" https://www.ajmc.com/view/study-of-...niversal-positivity-to-epsteinbarr-antibodies
I note that Dr. Kevin Lee is in the group going to Mulheim to be present during the trial starting Nov 15th.
 
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I really wonder if HSCT would work for ME like it does for MS. It’s the complete reboot of the immune system using chemo to wipe it out then stem cells to help rebuild it quickly.
The only reason I wonder is that Fluge and Mella and others are still looking at things like altering the immune system, chemo drugs, and issues around autoimmunity.
This is thought to be the most effective treatment out there for MS as long as your a good candidate (young, active RRMS, otherwise healthy). For some almost curative. Just really risky and not covered so unless your in a trial, I’ve heard around $200,000.00 😳
 

Learner1

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I really wonder if HSCT would work for ME like it does for MS. It’s the complete reboot of the immune system using chemo to wipe it out then stem cells to help rebuild it quickly.
The only reason I wonder is that Fluge and Mella and others are still looking at things like altering the immune system, chemo drugs, and issues around autoimmunity.
This is thought to be the most effective treatment out there for MS as long as your a good candidate (young, active RRMS, otherwise healthy). For some almost curative. Just really risky and not covered so unless your in a trial, I’ve heard around $200,000.00 😳
My doctor suggested it a while back. There are some potentially good benefits, though no guarantees and it can be unpredictable. And, as a cancer survivor, it did not seem like a good idea - there can be a risk of provoking cancers.
 

lenora

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This very thing is the reason many of us were upset when the studies from both AIDS and MS never filtered down to us about 35 years ago. So here we are, just striking out again.

I know people with both ME and MS, and one with MS and cancer (we're all older, so the immune systems aren't great). My friend with MS is now paying $90,000/yr. for her medication...this comes out of her pocket. It was somewhat lower, but was just given a hike in price. We often marveled that a lot of our symptoms were the same. She testifies before Congress for both JDF (her daughter has it) and MS & she is extremely well informed. Needless to say, her MS is giving her more problems than her cancer; exhaustion being one of the foremost.

Actually the drug she pays for is a new drug used for chemo. Interesting to see how drugs are being used for so many off-use purposes. Yours, Lenora.
 

Booble

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A story about MS.
My grandmother, born in around 1907-ish had MS. She was a young office worker and one day when she was trying to stand up she fell to the ground. She was devastated about being in a wheelchair and determined to walk again. She was able to have some kind of experimental treatment where they put electrodes on her legs. She told me a story about how after one of her sessions she was able to get up and walk. She looked out the window and saw a phone booth across the way. She somehow managed to get that phone booth and called up my grandfather and told him that she walked across to the phone booth. (Not sure the veracity of this story.) She went on to be able to walk (albeit her legs always had a sense of "pins-and-needles") and she played golf into her 90s. She lived to be 103 years old.
 

lenora

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Yes, @Emmarose47, that's not as unusual as people think. I also know people who have both ME, FM and Cancer. Most are having an easier time dealing with their cancer b/c there are treatments that are used to the max.

Great progress has been made with cancer in the years that I've been alive. Perhaps that progress will extend to us someday....let's hope and do everything possible to make it happen. Yours, Lenora.
 
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Dr. Elem Tremlett (UBC MS researcher) did the first large study about the prodromal phase of MS, fibromyalgia was found to be a part of it.

I notice a lot of people with MS have fibro. I have MS and ME.
 

lenora

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HI @WinterWren ....My neurologist deals with seriously ill people with all sorts of neurological diseases. He says that most of them also have FM......anything that irritates the cord itself usually leads to FM. Some are so horribly ill, I do feel for them.

No, it's not unusual for people with ME to also have FM. Meds are better now than they used to be, but all still leave a lot to be desired. Yours, Lenora.
 

Nord Wolf

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