Soluble Guanylate Cyclase for use in treatment of CFS with B-cell depletion

[leokitten]

I've also been wondering whether NO signalling or production possibly gets downregulated by the body in response to something ME/CFS is doing? So as a possible alternate explanation instead of an autoantibody?

 

[leokitten]

@deleder2k do you have any more information on Fluge/Mella patients regarding riociguat (Adempas), is it helping a lot of patients? or a few? which types?

 

[deleder2k]

I am sorry, but I have no information about this drug. I only saw it on The European Patent Offices site.

They could be doing a trial on it, or on other drugs. I think Fluge said that they were engaged in more activities than already known. They probably don't want to reveal anything yet..

 

[Bob]

Drs Fluge and Mella seem to be involved in endless activities! They're like a human version of a sun - constantly churning out energy - and helping all those they shine upon. And never sleeping! Thank goodness for the Vikings!

 

[leokitten]

I am sorry, but I have no information about this drug. I only saw it on The European Patent Offices site.

They could be doing a trial on it, or on other drugs. I think Fluge said that they were engaged in more activities than already known. They probably don't want to reveal anything yet..

Is it possible to find out if they are doing or going to do a trial on it yes/no?

 

[Kati]

in Neurally mediated hypotension the blood pressure goes down.
with Postural orthostatic tachycardia syndrome, the heart rate goes up and the blood pressure also goes up in an effort to compensate and provide oxygenation to the vital organs.

Now some people with autonomic dysfunction can also have both.

Sorry I was responding from a post from @leokitten on the first page

 

[deleder2k]

Is it possible to find out if they are doing or going to do a trial on it yes/no?

I am not sure if Øystein Fluge would like comment on that. He usually answer e-mails. You can try him out:

oystein.fluge@helse-bergen.no

 

[Marky90]

Drs Fluge and Mella seem to be involved in endless activities! They're like a human version of a sun - constantly churning out energy - and helping all those they shine upon. And never sleeping! Thank goodness for the Vikings!

That picture would make a cool t-shirt

 

[leokitten]

in Neurally mediated hypotension the blood pressure goes down.
with Postural orthostatic tachycardia syndrome, the heart rate goes up and the blood pressure also goes up in an effort to compensate and provide oxygenation to the vital organs.

Now some people with autonomic dysfunction can also have both.

Sorry I was responding from a post from @leokitten on the first page

Having NMH and POTS/OI means you have hypotension most of the time, and with POTS/OI this is thought to be due to low blood volume. Yes when you stand up your heart rate and blood pressure shoot up in order to provide adequate blood pressure and flow to the brain, but this is merely to try and compensate for the fact that blood pressure and volume are actually too low.

So knowing this it doesn't explain at all why sGC activators/stimulators which are potent vasodilators are causing significant improvement in symptoms for a lot of people with ME/CFS. You would think that this would make people with low blood pressure and volume way worse.

Or it may be that these drugs are only helping people in my subset. ME/CFS caused my blood pressure to suddenly go from normal to prehypertension range and I never got OI or NMH. The raised blood pressure I found was due to two things, one being SNS activation (which Fluge/Mella believe is due to low NO).

The other is due to hypervolemia not hypovolemia. I've also had many episodes of POTS but I challenge people to assume this is due to low blood volume. I had my blood volume measured by Daxor (the most accurate method) three times and all three times I had severe hypervolemia due to highly elevated plasma volume not red blood cell volume (so no polycythemia).

This is why I challenge PWME to not draw immediate conclusions if you have POTS, it doesn't always mean you have low blood volume. Very few people have actually gone and measured their blood volume with Daxor and I think it's very important to do so to verify your blood volume status and not to just draw conclusions based on symptoms.

In addition to having hypervolemia ME/CFS caused me to have bradycardia all the time except during those episodes of POTS. And this makes complete sense, hypervolemia causes bradycardia. I've also written up a thread here on PR to show people that the polyuria we get in conjunction with low aldosterone and vasopressin/ADH are in many cases a natural compensatory reaction to the fact that we have gone hypervolemic and our bodies are trying to desperately get rid of the excess water in our blood. A lot of people get polyuria and measure aldosterone and ADH and see both very low and then think this is causing low blood volume when it's not always the case.

These vascular changes caused a lot of other symptoms for me, rapid global muscle and tissue loss, abnormal hair loss and accelerated greying, bulging varicose veins. You would think with hypervolemia this wouldn't happen but it does and this all points to poor vascular dilation and tissue perfusion.

So to me it seems like many of our symptoms can be explained by the fact that we have these vascular problems.

 

[greeneagledown]

@leokitten -- If you do get in touch with Fluge and he provides you with any interesting info, we'd love to hear about it on here!

 

[Jill]

Im sure you will all remember Dr Goldstein and his mammothly difficult books.
One of his first treatments in his algorithym was nitroglycerine. the same stuff used under the tongue for angina. It gives a headache but also clarity later. Must try it on my Al. Interesting the F&M are getting to same end result maybe via a diff route. If they don't have his books maybe they need to get them. I could post them mine if the are out of print. Can someone who knows them find out if they want them and let them know - I would much rather someone who could understand them had them over me.

 

[msf]

God. I feel embarrassed posting this, but it may have relevance in some of these endothelial NO ME/CFS cases:

Borrelia Burgdorferi have been demonstrated in vitro to invade endothelial cells intracellularly. I don't know the significance of that, or whether enteroviruses do the same, or some other pathogen. I think it's clear Fluge and Mella don't think Bb is pertinent.

I realize, too, there are significant reasons why Bb cannot equate to ME/CFS. For instance, the heavy female portion of the ME/CFS community runs counter to Bb demographics.

I point out these Lyme data not to undermine a thread or be contentious. I post them because I have questions about how they play into a development, and because others besides me may find the data interesting.

I also realize how sometimes I can sound like a broken record, and for that, my apologies in advance.

To play devil´s advocate (or devil´s skeptic?) for a second, I think a lot of infections affect the endothelial cells, since this is how a lot of them spread through the body.

 

[Jesse2233]

Has anyone tried the drugs mentioned in the patent?