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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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heapsreal

heapsreal

iherb 10% discount code OPA989,
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australia (brisbane)
gettinbetter said:
I am OK with anecdotal information I would rather try it to see if it works or give it a good look over rather that wait for a study that may never come
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Thats all we really have here and what these forums are about, sharing our anecdotal experience because we get know where with drs.

Cfs patients need to know more about their condition because drs dont know or care. I was on an MS site to see if theres good info there. I was suprised how little many of them knew about treating ms etc and probably dont have to know and can just rely on their drs. Something cfsme cant do.
 
fingers2022

fingers2022

Senior Member
Messages
427
So we are all agreed then?
Waiting for studies right now is a game for losers...?
Trying anecdotal stuff...hey with a little bit of science behind it, come on...we're not talking LP, CBT, GET, Wessely, Crawley, Chalder (ahem, spitoon)...is OK. Indeed it's possibly the best experimental science we've got...show me a researcher researching effective treatments...ok rituximab, I'm not up to speed and crap at history...anything 'proven'?

Here's my proposal: If you feel strong enough, both mentally and physically, give ART a shot. Expect some rough water, ride the storm a little if you still feel strong. Back off if you think you should - gut feel is always good. Rest up and get strong again.

Importantly, report back here with both positive and negative experiences. Tell your friends. Build the momentum. Stay together folks, because if WE don't stay together, no other f***** is going to help us.
 
G

gettinbetter

Senior Member
Messages
278
Location
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Turnin Japanese I think I'm turnin Japanese I really think so



fingers said:
PACE is a study
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What is PACE?

Stretched said:
We're stuck in a research mode
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Similar to cancer research in the USA? in the sense of knowing a lot about it but not promoting a preventative remedy ( which alternative Docs do)


heapsreal said:
On arvs was able to weight train more regularly and harder.
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I could not find anything on arv


fingers said:
Waiting for studies right now is a game for losers...?
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Why is that?

fingers said:
.ok rituximab
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So do some believe CFS is an autoimmune disease?

fingers said:
Importantly, report back here with both positive and negative experiences
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Rich's Methylation Protocol helped
Using antibacterials for Chlamydia Pneumonia has helped both antibiotics and herbal
both not the full answer for me
Now I am talking with Greg of B12 oils who has suggested a protocol for me and it's very inexpensive to try will know more later when I will hopefully have the strength of ten men

Get some sleep
 
Last edited:
heapsreal

heapsreal

iherb 10% discount code OPA989,
Messages
10,098
Location
australia (brisbane)
Valentijn said:
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.
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Most people dont have access to this type of testing i guess. But if people go from not being able to exercise or suffering badly with pem to exercising with little or no pem, thats a pretty good sign their physical function has improved.

It all comes down to if people believe what another person is saying or not. Asking for proof when theres no diagnostic marker or an unproven marker such as the 2 day cpet test which is only done by a small number of researchers, is just putting your head in the sand. I dont see what people have to gain by saying arvs have helped them alot, unless theres proof that someone works for a pharma company selling arvs and has a conflict of interest.

Its always been the case that if someone improves significantly than they cant have had true ME, whatever that really means??
 
fingers2022

fingers2022

Senior Member
Messages
427
heapsreal said:
Its always been the case that if someone improves significantly than they cant have had true ME, whatever that really means??
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I half agree with that, HR. I think it depends what the explanation is. If someone improves say with GET, CBT, the dreaded LP, healing, crystals, homeopathy, laying on of hands...then yes, those of us who know what PEM feels like are going to be sceptical. However, if there is at least a glimmer of science in there that fits with the bigger picture...like ART controlling a RV thus helping the immune system deal with co-infections, then I for one would be less sceptical and would want to know more. I also don't think it would be difficult or expensive to conduct something akin to 2-day CPET testing. Measures of exercising heart rate or onset of blood lactate accumulation (OBLA) at fixed workload, both pre and post a course of ART would do it.
 
fingers2022

fingers2022

Senior Member
Messages
427
gettinbetter said:
Turnin Japanese I think I'm turnin Japanese I really think so




What is PACE?

Similar to cancer research in the USA? in the sense of knowing a lot about it but not promoting a preventative remedy ( which alternative Docs do)


I could not find anything on arv


Why is that?


So do some believe CFS is an autoimmune disease?


Rich's Methylation Protocol helped
Using antibacterials for Chlamydia Pneumonia has helped both antibiotics and herbal
both not the full answer for me
Now I am talking with Greg of B12 oils who has suggested a protocol for me and it's very inexpensive to try will know more later when I will hopefully have the strength of ten men

Get some sleep
Click to expand...

PACE is the 'study' by the Wesselly school (White et al) which claims that fatigue in ME is caused by deconditioning, so that graded exercise therapy (getting fit) and CBT (dealing with false illness beliefs) cures it.

ARV/ART = antiretroviral/antiretroviral therapy

Yes, there is a school of thought that considers ME to be autoimmune. Personally I don't see any sense in that, but we might find out posthumously :)

We are primarily discussing ART here on this thread...anything that might complement this is of interest, but not really as alternative approaches - probably better discussion elsewhere.
 
G

gettinbetter

Senior Member
Messages
278
Location
San Francisco Bay Area
fingers said:
PACE is the 'study' by the Wesselly school (White et al) which claims that fatigue in ME is caused by deconditioning, so that graded exercise therapy (getting fit) and CBT (dealing with false illness beliefs) cures it.
I wish that were true


ARV/ART = antiretroviral/antiretroviral therapy
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That is interesting Would like to know more about that?
Thanks for the response
 
V

Valentijn

Senior Member
Messages
15,786
heapsreal said:
It all comes down to if people believe what another person is saying or not.
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If the source is a salesman of any sort, I need iron-clad proof. If it's someone who's been on this forum for years, and discussed their symptoms, etc, and seems reliable, I'd probably believe them.

The problem comes from the hit-and-run cure stories from purported patients. But there's usually no way to know what they've been through, and how much they've really improved. They may have been diagnosed inappropriately, and deliberate bias built into treatments can make it impossible to assess anyone's claims regarding those treatments. It also doesn't help that such patients stop by only to preach in the midst of their internet recovery tour, not to engage.
 
fingers2022

fingers2022

Senior Member
Messages
427
Valentijn said:
If the source is a salesman of any sort, I need iron-clad proof. If it's someone who's been on this forum for years, and discussed their symptoms, etc, and seems reliable, I'd probably believe them.

The problem comes from the hit-and-run cure stories from purported patients. But there's usually no way to know what they've been through, and how much they've really improved. They may have been diagnosed inappropriately, and deliberate bias built into treatments can make it impossible to assess anyone's claims regarding those treatments. It also doesn't help that such patients stop by only to preach in the midst of their internet recovery tour, not to engage.
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Anyone contributing to this thread a salesman, messiah, hit and run artist?
In spite of the limitations of this medium, I don't think it's all that difficult to distinguish those who suffer from what we call Myalgic Encephalomyelitis....for want of a better name perhaps.

Also, efficacy of treatments for anything might be difficult to assess, but we all make our own judgements and decisions all of the time.
 
fingers2022

fingers2022

Senior Member
Messages
427
Valentijn said:
God does not play dice with the universe; He plays an ineffable game of his own devising, which might be compared, from the perspective of any of the other players, to being involved in an obscure and complex version of poker in a pitch dark room, with blank cards, for infinite stakes, with a dealer who won't tell you the rules, and who smiles all the time.
--Terry Pratchett, "Good Omens"
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At least his CV (resume') is a better fit than that of the likes of Kim Jong-un, Lipkin, Wessely, all of whom would love to claim the top spot, as would many medics.
 
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