Full Remission Claimed

[Stretched]

Remember, folks, there is no clinical test for CFS/ME, so any claims of remission must be taken with grams of salt; and remission means remission, not cure. I went into remission for no reason whatsoever, and then this damn illness crept back and got even worse.

I don't want to be the person with the discouraging words but these are anecdotes, not studies.

We're stuck in a research mode and most of those trials ultimately get shot down. During the testing we PWCs latch onto the then still anecdotal
process in hopes that we'll get the benefits of the objectives of the test. We all can reflect back on the major trials, e.g. XMRV, CFS TRIALS, Ampligen,
Norwegian Cancer Correlates, etc. I dare say many of us grabbed a handful of the stuff being studied and interpolated it into our own anecdotal efforts for relief.

These self trials probably make sense on more than one level. For one, there are no proven go-to alternatives. Secondly, it's 15 years from lab to clinical. A lot of
us are getting old and the illness is progressing... . So, if some sound testor gets remission from studied rock soup, then I'll have a bowl of what s/he is having, maybe add a couple of ARV's on the side. 'Beats hell out of the palliatives outlined in the 'Physicians Guide to Treating CFS/ME', IMHO.

 

[heapsreal]

@IIITJ Challenge accepted.
Like it...thanks.

+Heapsreal. Yes not prohibitively expensive and no prescription required.

I'm a simple chap, but doesn't that imply that it wouldn't be difficult to run a trial?
Who can we get to do it, what markers/outcomes would be tested?
Let's go budget and low tech - how about testing resting heart rate before and after a given exercise test pre-treatment, then test again post-treatment? Test exercising heart rate too. Shooting from the hip here, but if RHR improves, then that's a good indicator of improved health and function - that's well-evidenced. My theory is that reduced viral load (from meds) reduces resting heart rate.

Any researchers out there up for it? Anyone know a man/woman with a PhD who can?

Low tech. I guess i jugde my self low tech. My exercise tolerance was a shocker. On arvs was able to weight train more regularly and harder. General symptoms i felt better. All i can really go off is i felt better. No real test or viral marker to go by. I will say for the first time in years all my t cells were within range as usually several are high. My neutrophils last tested remained low.

 

[fingers2022]

Low tech. I guess i jugde my self low tech. My exercise tolerance was a shocker. On arvs was able to weight train more regularly and harder. General symptoms i felt better. All i can really go off is i felt better. No real test or viral marker to go by. I will say for the first time in years all my t cells were within range as usually several are high. My neutrophils last tested remained low.

Oh no, more anecdotes
You imply you are now off ARV's but maintain the gains...?

 

[fingers2022]

We're stuck in a research mode and most of those trials ultimately get shot down. During the testing we PWCs latch onto the then still anecdotal
process in hopes that we'll get the benefits of the objectives of the test. We all can reflect back on the major trials, e.g. XMLV, CFS TRIALS, Ampligen,
Norwegian Cancer Correlates, etc. I dare say many of us grabbed a handful of the stuff being studied and interpolated it into our own anecdotal efforts for relief.

These self trials probably make sense on more than one level. For one, there are no proven go-to alternatives. Secondly, it's 15 years from lab to clinical. A lot of
us are getting old and the illness is progressing... . So, if some sound testor gets remission from studied rock soup, then I'll have a bowl of what s/he is having, maybe add a couple of ARV's on the side. 'Beats hell out of the palliatives outlined in the 'Physicians Guide to Treating CFS/ME', IMHO.

What Stretched said...and good luck to all of you waiting for 'unbiased' studies...in the next life maybe, if you're feeling religious - lot's of peer reviewed studies on that lol!

 

[heapsreal]

Oh no, more anecdotes
You imply you are now off ARV's but maintain the gains...?

Never said cured. I go off once in awhile to see how effective the tenofovir is and if i need it. Ive been off maybe 2 months and need to go back on. I also lowered my famvir dose which wasnt helpful and another shingles reactivation. its better than feeling like crap, so my anecodotal evidence is my only judge. I dont need a study to tell me if i feel better or not or if i need arvs or avs and i dont really care.

Dr Deckoff jones was on arvs for a few yrs and she said she improved but plateaued. She stopped and last i read maintained her function. So for some they might be able to stop after a certain period, but what that time period is know one knows.

 

[lansbergen]

I dont need a study to tell me if i feel better or not or if i need arvs or avs and i dont really care.

 

[Stretched]

I go off once in awhile to see how effective the tenofovir is and if i need it.

Did you ever have IRIS or other severe side effects to ARV's? Dang, the warnings and some pamphlet reviews on the ARV's look onerous!

 

[heapsreal]

Did you ever have IRIS or other severe side effects to ARV's? Dang, the warnings and some pamphlet reviews on the ARV's look onerous!

No IRIS but its possible being on antivirals and rounds and rounds of antibiotics for different infections may have reduced iris effects. Both avs and abx have helped.

My view is that if arvs, every arv can be different, that if they were that dangerous then they wouldnt be on the market for hiv. Many side effects etc listed im guessing probably originate from the original arvs like azt which have bad side effects. Tenofovir is now used as a prophylaxis in high risk groups, so something thats expected to be taken for many years. Regular blood work should catch most irregularities.

Id suggest to look up the side effects and see what percantage of patients get those side effects but also take in mind that most hiv people are on multiple drugs so it can be hard to distinguish which particular arv might be a risk. Also have prior blood work especially for liver and kidney function and ongoing blood work.

 

[IreneF]

If claims of temporary remission can't be taken as true because there is no clinical test, then claims of ME/CFS could also not be taken as true. Exactly what's happening in most of health care to us.

I definitely don't subscribe to such self-contradictory and inhumane indoctrinations.

The point is that we don't really know whether person-who-claims-remission had the same condition as we do; secondly, there's nothing to objectively measure so that we can say the remission is genuine. The lack of a diagnostic test is a huge problem.

 

[IreneF]

Sounds like GET and CBT are right up your street then. Each to their own.

The PACE trial is already being used as an example of how not to do a clinical trial. And the perpetrators, so to speak, threw objective measurement out the window.

 

[heapsreal]

The point is that we don't really know whether person-who-claims-remission had the same condition as we do; secondly, there's nothing to objectively measure so that we can say the remission is genuine. The lack of a diagnostic test is a huge problem.

What you say is true but for the last 16yrs ive had cfs for ive read and been told we will have an answer soon.

For me i weigh up no treatment in the for seeable future with trial and error while weighing up the risks to benefits.

 

[IreneF]

No IRIS but its possible being on antivirals and rounds and rounds of antibiotics for different infections may have reduced iris effects. Both avs and abx have helped.

My view is that if arvs, every arv can be different, that if they were that dangerous then they wouldnt be on the market for hiv. Many side effects etc listed im guessing probably originate from the original arvs like azt which have bad side effects. Tenofovir is now used as a prophylaxis in high risk groups, so something thats expected to be taken for many years. Regular blood work should catch most irregularities.

Id suggest to look up the side effects and see what percantage of patients get those side effects but also take in mind that most hiv people are on multiple drugs so it can be hard to distinguish which particular arv might be a risk. Also have prior blood work especially for liver and kidney function and ongoing blood work.

AIDS is nearly 100% fatal so anything that extends life is a better deal; drugs that are too risky for a less severe condition are on the market to treat HIV infections.

 

[IreneF]

What you say is true but for the last 16yrs ive had cfs for ive read and been told we will have an answer soon.

For me i weigh up no treatment in the for seeable future with trial and error while weighing up the risks to benefits.

I've had it nearly as long and was one of the first to try rituximab. There is a rationale for the use of ritux, but despite that it didn't work for me. I have been less interested in going off and trying things on my own since then.

I don't think there's enough research money available to make a difference in my lifetime. I hope to be proven wrong.

I also feel surrounded by false messiahs who are selling the latest miracle cures, which never work, of course.

 

[heapsreal]

AIDS is nearly 100% fatal so anything that extends life is a better deal; drugs that are too risky for a less severe condition are on the market to treat HIV infections.

And?

They developed many arvs since they brought azt to the market, are you saying they havent improved the safety profile?

Theres an arguement for a quicker death rather than a chronic illness with pain and suffering and after many years die of a comorbity because of cfsme.

If we use your logic than pain killers wouldnt be given to anyone unless they are dying. One can die alot quicker from morphine than from azt or hiv for that matter.

 

[heapsreal]

I've had it nearly as long and was one of the first to try rituximab. There is a rationale for the use of ritux, but despite that it didn't work for me. I have been less interested in going off and trying things on my own since then.

I don't think there's enough research money available to make a difference in my lifetime. I hope to be proven wrong.

I also feel surrounded by false messiahs who are selling the latest miracle cures, which never work, of course.

Thats why i say whats helped me. Never said im cured from arvs but its put a good dent in it. Even antivirals if i stop them i become much worse within days, i cant afford not to take them. I know they arent for everyone but they have a definite positive effect in me. Too many dots join up for me pointing to infections.

I guess theres a point where people give up on any type of treatment and depends what one has access too.

 

[Jill]

Do you have a way of describing what sort of ME you had?. By this I mean things like - sore glands on overdoing it, sore throat the same etc. plus sleep issues . I responded well to acyclovir the first time I took it, and did quite well on immunovir . Also did well on minocycline . Any matches there???
Did you get any tests done to sort of monitor yourself?
It looks like I'd need a prescription to allow entry into NZ of the meds. How did you deal with that ?
I'm thinking my gp prob won't help me which is a real pain. So near but so far. The dogs go over everything at the airport. Always pick up my naloxone.

 

[fingers2022]

I also feel surrounded by false messiahs who are selling the latest miracle cures, which never work, of course.

Hey Irene, I don't think anyone here is 'selling' anything - that implies a cost, profit etc. In such a transaction, one person usually pays something and the other hands over goods or service in return, and usually makes a profit.
We all have to make our own decisions, and indeed the nice thing about trying ART is that it's quite cheap, fairly low risk in the scheme of things, and we can go DIY (notwithstanding Jill's question just now which I'll get back to).
The purpose of this forum and discussion here is to help each other come to those decisions with the best information available. As we all know, we don't yet get the best information from studies, medics or anything formal, so this approach of experimentation, anecdote if you like, seems like a valid way forward.
Finally, as I've said, let's pull resources together and make a trial or two happen ourselves.

 

[fingers2022]

Do you have a way of describing what sort of ME you had?. By this I mean things like - sore glands on overdoing it, sore throat the same etc. plus sleep issues . I responded well to acyclovir the first time I took it, and did quite well on immunovir . Also did well on minocycline . Any matches there???
Did you get any tests done to sort of monitor yourself?
It looks like I'd need a prescription to allow entry into NZ of the meds. How did you deal with that ?
I'm thinking my gp prob won't help me which is a real pain. So near but so far. The dogs go over everything at the airport. Always pick up my naloxone.

Hi Jill, not sure who you are asking the question of, but here is my own answer.
For me PEM is THE diagnostic. I have high function, both physical and mental, no brain fog, no pain except for some pretty awful headaches. Yeah, swollen lymph nodes, sore throat, all those things get worse with activity...and sure, psychological stress, as with most things, is a factor.
I've had kidney function tests at intervals from local HIV clinic. They won't test stuff like CD counts as I don't have HIV (they tested that).
How do you get the meds into NZ? Folk get them in Aus....is it vastly different?

 

[fingers2022]

The PACE trial is already being used as an example of how not to do a clinical trial. And the perpetrators, so to speak, threw objective measurement out the window.

That's kinda my point. There are other studies (Lipkin XMRV?) which might also be used as examples. You wanna put trust in peer-reviewed journal articles or anecdotes? Roll the dice...

 

[Stretched]

...Id suggest to look up the side effects and see what percantage of patients get those side effects but also take in mind that most hiv people are on multiple drugs so it can be hard to distinguish which particular arv might be a risk. .

That's a good point, most use multiple and/or different stage related (cellular defense) ARV's, which would skew the % of effects.