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
553
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
18,300
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
553
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
18,300
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
886
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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Artemisia

Senior Member
Messages
553
My pain was all over my body when my ME was particularly severe, but typically it was just focused on my front thigh muscles. That made walking an effort in enduring the pain. The day after my first dose, I not only did the same ~500m walk, but at that point I realized that I was pain-free, and continued hiking up a steep hill, and then continuing following trails for another km or two. It just felt so wonderful to be able to hike without pain. I could have gone further, but ME teaches us to not overdo things just because we feel temporarily better. The LDN worked reliably, allowing me to spend that winter going on long (several hours long) hikes, often daily.
This confuses me. Long hikes daily... did you get PEM? I didn't know that very long daily hikes would be possible with ME. Or do you mean the LDN allowed you to overcome PEM enough to hike, beyond its help with your pain? Just trying to understand.
 
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heapsreal

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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

Supposedly most people recover fine from ebv or cmv mono but you would think if someone hasn't recovered from mono after 3 months and has high viral titres, cd8 T cells etc, it should be a standard treatment to then be put on a course of antivirals to possibly help prevent cfs post viral issues.

I often wonder if i had antivirals very early on if I'd have been cured. Instead it was 7 years after onset I started antivirals which helped and I think in a better place than if never had antivirals.
 

cfs since 1998

Senior Member
Messages
886
Supposedly most people recover fine from ebv or cmv mono but you would think if someone hasn't recovered from mono after 3 months and has high viral titres, cd8 T cells etc, it should be a standard treatment to then be put on a course of antivirals to possibly help prevent cfs post viral issues.

I often wonder if i had antivirals very early on if I'd have been cured. Instead it was 7 years after onset I started antivirals which helped and I think in a better place than if never had antivirals.
Indeed...the government's circular logic (it's not EBV, because EBV doesn't last longer than 6 months) has caused irreparable harm to patients.

In 1985, Dr. James F. Jones at the National Jewish Center for Immunology and Respiratory Medicine in Denver, Colorado, wrote: "Epstein-Barr virus infection may not be self-limiting, and the virus may be associated with clinically recognizable illness other than infectious mononucleosis in children as well as in adults."
 

Wishful

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Alberta
I didn't know that very long daily hikes would be possible with ME.
A subset of PWME can do strenuous physical activities. There's no apparent changes to muscle function, blood flow, or any of those other things that affect muscles. Some of that subset will get PEM from activities, some won't. For me, I'd get PEM from pushing my boundaries: a 2 hr hike might not trigger PEM, but pushing that to 4 hrs might. However, for an unaccustomed activity, such as washing an overhead window, it might only take a few seconds of that to trigger PEM (after a 24 hr delay).

People who do have reduction of physical capability typically conclude that ME involves muscles,, but some of us don't have that reduction, so it's not an essential part of ME. There are other explanations for the reduction in physical capability, such as neurological misprocessing. Getting muscles to do what we want them to do involves a lot of subsystems, any of which can malfunction.

The LDN just blocked my pain, removing a barrier to wanting to do physical activities. Long hikes when your muscles hurt with each step is no fun.
 

Artemisia

Senior Member
Messages
553
For me, I'd get PEM from pushing my boundaries: a 2 hr hike might not trigger PEM, but pushing that to 4 hrs might. However, for an unaccustomed activity, such as washing an overhead window, it might only take a few seconds of that to trigger PEM (after a 24 hr delay).
Ah ok, thanks for explaining. That sounds crazy-making!


Some of that subset will get PEM from activities, some won't.
Do you mean some of that subset won't get PEM from physical exertion, but they'll get it from mental or emotional exertion? There must be some PEM; otherwise how would they meet the diagnostic criteria?
 

Rufous McKinney

Senior Member
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14,493
In 1985, Dr. James F. Jones at the National Jewish Center for Immunology and Respiratory Medicine in Denver, Colorado, wrote: "Epstein-Barr virus infection may not be self-limiting, and the virus may be associated with clinically recognizable illness other than infectious mononucleosis in children as well as in adults."
My doctor in 1974....... knew this already. He said I had "chronic" EBV.
 

Wishful

Senior Member
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6,418
Location
Alberta
Do you mean some of that subset won't get PEM from physical exertion, but they'll get it from mental or emotional exertion?
Yes, I think there's an old thread or two about physical vs cognitive exertion triggering PEM. As I recall, some people just had cognitive triggers. In my case, I had both physical and cognitive triggering, but I managed to stop getting PEM (see thread about cuminum cyminum). At present, I don't meet the criteria for ME, but the other symptoms are the same, so I consider myself still suffering from ME. It's not my fault that the criteria are too limiting to fit rare cases.
 
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