Use of sildenafil (viagra) to alter fatigue, functional status and impaired cerebral blood flow in ... CFS, 2020, Friedman (Pfizer)

Seriously though, it is a shame the study couldn't be completed properly. I feel fairly sure that problems with blood circulation are part of the ME/CFS pathology.

If the treatment can't be blinded, perhaps there could be some objective outcomes. Activity level might be one, although that would have to be measured for quite a long time to make sure it really was objective - which means treatment for a long time too. Measures of orthostatic intolerance perhaps would be more responsive.

I agree, this study could have been really interesting.

Measures of 2 day CPET and peripheral blood flow would have been interesting, though that wouldn't have helped the recruitment figures very much.
 
I actually tried Cialis once, because me and another with ME who become much better with alcohol hypophesized that the increased blood flow not only to the penis, but lungs, might improve symptoms.

Turned out it only further improved function locally however

And gave me a headache

Edit: I also tried Nitroglycerine (dilates blood vessels systemically), which gave me an even worse pounding headache
 
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I feel some temporary relief taking Niacin (a vasodilator). Niacin is also hypothesized to be involved in The Metabolic Trap Hypothesis. It's made from NAD, if I remember correctly, which in turn is made from kynurenine, which the models predict is what's missing.
 

That's interesting, I've found I have the exact same thing. Do you know if there's been any research on it? I've only been able to find reference to alcohol intolerance in the literature so far.​

Welcome to the gang!
Dont think there has been..
I contacted Haukeland about it and asked if they would like to investigate, they were aware of the situation, but not something they prioritize obviously since were a small sub group
 
In some situations alcohol can increase my capabilities, temporarily, so it's not unheard of, by me.

I have always assumed that this is due to it maybe having an effect on blood flow in my brain.

The downside is generally quite unfunny, but I have occasionally been quite surprised by how rapid the improvement has been when I am barely able to stand up (due to having been expected to do too much socially) after even a small amount of alcohol (generally beer flavour).

I do not as a rule drink, due to the downsides.
 
i dislike the idea of hiding symptoms with medication because it is precisely those symptoms that warn us that we are coming very close to causing pem another catch 22 of this damned illness . i know from experience that just reading to much can and frequently does cause pem a dry mouth and sore throat tend to be my early warning signs.
Who says anything about hiding symptoms?

Viagra has a major effect on me. I experience less pain and fatigue. Not sure if I would be much better if I took it every day, but when I have done too much or need to do more than I able to, then taking Viagra helps a lot. I get some of the same effect after drinking alcohol.

I am mostly houseridden. ME accoridng to CDC/ICC. Very much pain, especially in my legs.
 
Seriously though, it is a shame the study couldn't be completed properly. I feel fairly sure that problems with blood circulation are part of the ME/CFS pathology.

If the treatment can't be blinded, perhaps there could be some objective outcomes. Activity level might be one, although that would have to be measured for quite a long time to make sure it really was objective - which means treatment for a long time too. Measures of orthostatic intolerance perhaps would be more responsive.

Do we think it could help there?

Certainly if so and the dose could be got right to minimise risk then I agree something with measures in that would surely be amazing?
 
Who says anything about hiding symptoms?

Viagra has a major effect on me. I experience less pain and fatigue. Not sure if I would be much better if I took it every day, but when I have done too much or need to do more than I able to, then taking Viagra helps a lot. I get some of the same effect after drinking alcohol.

I am mostly houseridden. ME accoridng to CDC/ICC. Very much pain, especially in my legs.

Me too on the leg-focus particularly as part of PEM and if I've had my legs down.

I find this one really quite interesting. Does it help with cognitive type symptoms too?

I'm already thinking what 'other' measures I'd like to put alongside orthostatic

I'm not sure it would necessarily be one of those that 'covers symptoms' rather than one that might help genuinely because I'm not sure the orthostaticky stuff doesn't add to the whole cycle of load etc.

EDIT: you'd definitely check it by said 'other measures' ie cognitive, function-related (I think it is time we moved to developing something standard there that is to do with something like visible or another online app) taken longitudinally
 
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In some situations alcohol can increase my capabilities, temporarily, so it's not unheard of, by me.

I have always assumed that this is due to it maybe having an effect on blood flow in my brain.

The downside is generally quite unfunny, but I have occasionally been quite surprised by how rapid the improvement has been when I am barely able to stand up (due to having been expected to do too much socially) after even a small amount of alcohol (generally beer flavour).

I do not as a rule drink, due to the downsides.
me too

also very much depends on stage of where my health is at (on way down then I don't think so - by which I mean 'you've done enough normally over preceding 6months + to really whack youself with a deterioration that will then slowly occur over 6-12months or more)
 
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