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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Full Remission Claimed

Jesse2233

Senior Member
Messages
1,942
Location
Southern California
Was just thinking about that. OK, as an ex athlete, I still keep a log. It's up 15% in terms of volume, and up about 10% in terms of intensity. Recovery is noticeably improved.
I'm now up to about 20% of my pre-ME activity volume...but probably still doing more than the average Joe/Joanna.

Nice. What does that look like in terms of daily steps?
 

fingers2022

Senior Member
Messages
425
@IIITJ Challenge accepted. :rofl:
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?
 

fingers2022

Senior Member
Messages
425
Nice. What does that look like in terms of daily steps?
Not big into steps except for Coltrane.
Right, let's say a step is half a metre. So 3.2k steps would be a mile. Now it depends how fast you step what the energy expenditure would be (steps running will also be longer than steps walking)...also how heavy you are, gradient, wind resistance etc. I break everything down to an average equivalent of one mile of running (I call this a MET...not the same as the generally accepted term which is a multiple of basal metabolic rate). I swim, bike and run and do resistance work. My weekly average since starting the meds is 33 MET...pre-ME I averaged 120-140 MET and did a full time stressful IT job too. As you see, with ME, I still do more than most folk without ME, so I'm not the best of examples. However, I think we can all improve from where we are...actually with or without meds...nutrition and relaxation important too, but that's all probably well-covered on other threads.

I should add, that pre-ME doing 120-140 MET + job I felt great, doing a lot less with ME I feel pretty crap...understatement.
Also, I am hopeless...I should really be taking things easy whilst trialling these meds but I can't. Like a bull at a gate...sorry folks.
 
Messages
36
Been on Recocovir (combo of Tenofovir and Emitricabine) for 2 months. Seeing improvements, most notably my resting heart rate is moving back towards pre-ME levels and lymph nodes under jaw are down. Still getting some other viral symptoms and peripheral neuropathy, but I do push teh physical activity a lot (former elite triathlete). I've had enough improvement to keep going, think it will take a year or two or three to say I'm 'cured'.

Side effects? Yes, first two weeks headache and although have a weird head with ME anyway, it was just a bit differerent, not really worse than ME. Then there's the vivid dreams, which continue, are a bit like virtual reality and aren't unpleasant or disturbing.

XMRV? Mikovits? Keep your eyes, ears, brain open. Lots of dodgy stuff went on. Mikovits isolated/sequenced a real retrovirus which infects humans. Lots of folk with vested interests didn't want it to be. Enough said, more detail is out there. I think we'll see the empirical evidence that folk start to get better on ART...the pioneers.

Finally, I do it all without a doc. Don't need a prescription. Wonderful. Local HIV clinic have done kidney function tests for me, as if I'm on PREP.

wow that's so good you're improving on it! I am also thinking of taking this medicine and can get it safely online, I'm just very worried it makes me worse? Is there a risk of making someone with CFS/ME permanently worse taking this?
 

fingers2022

Senior Member
Messages
425
wow that's so good you're improving on it! I am also thinking of taking this medicine and can get it safely online, I'm just very worried it makes me worse? Is there a risk of making someone with CFS/ME permanently worse taking this?

Hi taa2, I can only give you my own experience. There has been nothing to make me think these meds would make someone worse...however, I am fairly strong and resilient and don't have other comorbidities. I tolerate almost everything pretty well. I once had antimony (heavy metal) intravenously for Leishmaniasis, and that seemed far more toxic (it was pre-ME), yet nobody even questioned it. i do not take drugs, end of, and have resisted taking anything for a long time...however I'm 60 next birthday, so thinking what the hell, give it a go. If your kidney function is good (drink tons of good clean water and have a healthy diet) then I'd say you should be OK. These drugs are less toxic than they used to be apparently. If you're interested in joining a private support forum/network, send me a PM. Patient power, DIY, no option.
 

fingers2022

Senior Member
Messages
425
This is so very helpful, thank you for sharing such an objective assessment of your condition.
Thanks ITITJ (where'd you get that awesome monicker from?).
Yes it has to be objective, and since we don't have access to any useful serology and soforth, simple physiological biometrics are all we've got. I meant to add to this, regarding the 'steps' question, I don't include day to day walking around, general low-intensity functional stuff, unless it's a very physical activity like gardening or DIY. I know however that many with ME have very low physical function...I did too in the early days (26 years ago)...so counting functional steps can be useful.
As per a previous post, i think resting heart rate can be a very simple, useful and objective measure, both as an outcome and as a tool for deciding on whether to be active or not on any given day - can reflect fitness, recovery status, viral activity and psychological stress. Just need to decide what mix!
 
Messages
36
Hi taa2, I can only give you my own experience. There has been nothing to make me think these meds would make someone worse...however, I am fairly strong and resilient and don't have other comorbidities. I tolerate almost everything pretty well. I once had antimony (heavy metal) intravenously for Leishmaniasis, and that seemed far more toxic (it was pre-ME), yet nobody even questioned it. i do not take drugs, end of, and have resisted taking anything for a long time...however I'm 60 next birthday, so thinking what the hell, give it a go. If your kidney function is good (drink tons of good clean water and have a healthy diet) then I'd say you should be OK. These drugs are less toxic than they used to be apparently. If you're interested in joining a private support forum/network, send me a PM. Patient power, DIY, no option.
Thanks so much! I think I'll go ahead and just try it, I'll get a kidney function test (and HIV test to make sure 100%) before I start taking them :)
 

IreneF

Senior Member
Messages
1,552
Location
San Francisco
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.
 
Messages
15,786
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'd accept improved 2-day CPET scores as indicative of a remission :D No one ever provides that with their miracle-cure stories for some reason.
 

pamojja

Senior Member
Messages
2,378
Location
Austria
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.

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.
 

user9876

Senior Member
Messages
4,556
I'd accept improved 2-day CPET scores as indicative of a remission :D No one ever provides that with their miracle-cure stories for some reason.

I think occasionally people do seem to improve a lot and go into remission but the issue is attributing the thing they were doing at the time to the improvement. Its a natural thing to do but that's why trials are needed.
 

fingers2022

Senior Member
Messages
425
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.
Sounds like GET and CBT are right up your street then. Each to their own.
 

fingers2022

Senior Member
Messages
425
I'd accept improved 2-day CPET scores as indicative of a remission :D No one ever provides that with their miracle-cure stories for some reason.
Interesting that you cite 2-day CPET as an indicator. I'm using RHR as a DIY measure (I'm claiming neither remission nor cure btw, just some indications of improvement with ART). For me, exercise performance alone wouldn't represent cure or remission, as I can already perform quite well (VO2max 54, aged 59). However I did do a maximal Watt bike test for a student dissertation recently, performed well, but was too ill to do a repeat test 2 days later, whilst other subjects breezed it and performed about the same again. Maybe I'm contradicting myself here...hmmm, I'd want to feel less 'viral', but maybe that would go hand in hand with level 2-day CPET scores. Thanks for the thought - I can easily do a DIY CPET by doing say a bike or run time trial with HRM giving average heart rate, but there's always going to be some kind of recovery factor in there even if healthy, and this will increase with age.