POLL: Which standard ME/CFS treatment protocols have you tried, and which led to major improvements?

Which ME/CFS Treatment Protocols Have You Tried, And What Was The Result?


  • Total voters
    98
Messages
20
@Hip

Hello :) Okay,

So, I've been taking Arbidol for two months okay. I guess it's too early to assess the efficiency for my condition, but things feel slightly better... I will continue and keep you updated!

Best

Hello @JohnnyMinnesota99 :)

Could you please share youre experience with us? Are you still taking Arbidol and what dose do you take? And how is your condition at the moment?

I am very intressted in this treatment.
Thank you very much!
 

Artemisia

Senior Member
Messages
521
If you want to answer the poll, please see read the info below.

For a summary of the poll results, see here:




This poll asks which standard ME/CFS treatment protocols have resulted in major improvements in your overall ME/CFS symptoms, which treatments have resulted in minor improvements, and which treatments resulted in no improvements (if a treatment actually made you worse, then please choose the no improvement option).

Note that here we are using the terms "major" and "minor" with a precise definition:

A major improvement is defined as one where a patient moves up one level on the ME/CFS severity scale of very severe, severe, moderate, mild and remission. For example, if after treatment a patient moves up from severe to moderate, or moves up from mild to remission, those types of one-level improvements are classed as major.

So if you obtained such a major improvement from one of the treatment protocols in this poll, please vote accordingly.

If the health improvement you got from the treatment protocol was less than major, but is nevertheless definitely noticeable, that is defined as a minor improvement. If you had a minor improvement, please vote accordingly.

Minor is quite a broad category in this poll: from relatively small but clearly noticeable improvements, right up to significant improvements — but ones which are not quite large enough to be classed a major improvement.

In this poll, obviously only vote for treatments protocols that you have properly tried out. Do not vote for a treatment if you have never tried it, or have only half-heartedly tried it.


@Hip
In the poll results on your first post in this thread, it gives very different results from when I click "view results" on the poll.

Namely, the "view results" shows 5% and 7% report MAJOR IMPROVEMENT from Valtrex and Valcyte, but in your results summary in comment #1, the summary says:

Valtrex or Famvir— — — — — — 13% — — — — —
Valcyte— — — — — — — — — — — 50%

is it simply that when you last updated that first comment in 2019, the results were different because fewer people had taken the poll at that time?
 

Hip

Senior Member
Messages
18,276
In the poll results on your first post in this thread, it gives very different results from when I click "view results" on the poll.

You cannot go by the percentages shown in "view results", as these percentages have no meaning, as they relate to the percentage in relation to all the treatments. To get the correct percentage, you have to count how many people reported a major improvement for a particular treatment, and express that as a percentage of the total number of people who tried that treatment.
 

Artemisia

Senior Member
Messages
521
You cannot go by the percentages shown in "view results", as these percentages have no meaning, as they relate to the percentage in relation to all the treatments. To get the correct percentage, you have to count how many people reported a major improvement for a particular treatment, and express that as a percentage of the total number of people who tried that treatment.
got it, thanks! So valcyte and valtrex really were impressive.
 

Hip

Senior Member
Messages
18,276
got it, thanks! So valcyte and valtrex really were impressive.

Yes, they look pretty impressive in this poll, but I am not sure if that truly reflects the reality, as I heard a rumour that the Stanford ME/CFS Initiative stopped using Valcyte, due to the low response rate.

That said, some people do respond, and there are a few stories of responses in the first post of this thread.

I wanted to try Valcyte myself, as I have an an active cytomegalovirus infection (in addition to active coxsackievirus B4), but the drug caused mental side effects, so I could not continue.
 

cfs since 1998

Senior Member
Messages
866
I was just reading in Osler's web that Peterson & Cheney found that acyclovir (active form of Valtrex) resulted in an 80% remission rate if used within the first year after getting sick. But then Straus came out with his crap study and that set us back at least two decades.

Valcyte is more effective against EBV than Valtrex, but Valcyte doses are limited by liver toxicity. Valtrex can be used at higher doses offsetting the weakened effectiveness. Without a clinical trial comparing them, it is hard to know which is actually better.

I've compiled a page on antiviral pharmacokinetics here (it's still a work in progress):
https://mecfsresearch.github.io/antivirals.html
 
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