NIH Funds Chronic Fatigue Sydrome (ME/CFS) Grant to Increase Blood Volume

[Cort]

[fright]

[/fright]We just got some more confirmation of progress in ME/CFS at the NIH. Another grant for ME/CFS was just funded by the National Institute of Neurological Disorders and Stroke (NINDS) - ME/CFS's champion at the NIH.

A $246,000 Grant to Increase Blood Volume in ME/CFS

Marvin Medow has been studying POTS and ME/CFS for years. In a dramatic finding Medow was able to completely reverse the effects of the tilt table on cerebral blood flows, cognition, and other measures in POTS patient's using phenylephrine. One of his recent grants (study not published yet) examined the effectiveness of saline in treating ME/CFS.

This was the first time that saline has ever been assessed as a treatment for ME/CFS. While saline obviously isn't a cure it can help and a positive finding would surely lead doctors and researchers think differently about ME/CFS. It would hopefully lead to more doctors testing for low blood volume - see Daxor in the Resource section - and researchers attempting to understand why it's there.

[fleft]

[/fleft]The problem with saline is that infusing it over and over can cause problems. Medow, therefore, is going assess the effectiveness of an oral rehydration solution (ORS) developed by the World Health Organization (WHO) to rehydrate cholera patients. Cholera is a bacterium that can cause diarrhea so severe that death from dehydration can occur in hours.

Medow states in the grant that WHO's oral rehydration salts rival the effectiveness of IV infusions in increasing blood volume. In fact, Medow's preliminary data examining blood flows to the brain, cardiac output and blood drainage into the legs suggests that the WHO's ORS may be more effective than saline infusions in people with ME/CFS.

We hypothesize that equal volumes of ORS is not inferior and may be superior to intravenous saline infusion in increasing intravascular and interstitial fluid volume and improving orthostatic tolerance. Medow et. al.

The study will examine 30 ME/CFS patients with either POTS or neurally mediated hypotension (NMH) plus healthy controls. It will measure blood volume and neurovascular coupling before and after ORS use. It begins now and is expected to end in January, 2018.

ME/CFS needs many more grants like this, but it's good see this grant (and the big Nath study underway) as we await word from the Trans-NIH Working Group on how they plan to attack ME/CFS.

• Getting Your Blood Volume Tested Properly Using the Daxor Test

 

[Seanko]

In the UK Prof Julia newton & team are studying similar things at Newcastle University.

Phenylephrine is commonly found in cold remedies. It replaced pseudoephedrine which can be converted to Meth-amphetamine aka crystal meth reasonably easily. If you have seen Breaking Bad, you will know what I am talking about.

 

[Cort]

In the UK Prof Julia newton & team are studying similar things at Newcastle University.

Phenylephrine is commonly found in cold remedies. It replaced pseudoephedrine which can be converted to Meth-amphetamine aka crystal meth reasonably easily. If you have seen Breaking Bad, you will know what I am talking about.

Good to hear. I'm not surprised.

Loved Breaking Bad, by the way - great from the beginning to the end.

 

[Hello!]

This is great news!
Hard to imagine ORS being drinkable- bleck.
Would like to see how ORS stacks up agains SaltStick and water.

 

[Hello!]

Just checked to see if phenylephrine is in guaiphenesin(you know, the guaiphenesin protocol), it's not, unless you specifically get the kind with both, and the Guai people recommend just plain guai(didn't work over here.)

Breaking Bad was a hoot!

 

[PamJ]

Cort, thanks so much for this news. I have been diagnosed with POTS and NMH and have been helped by saline infusions in the past.
My question - how does one get the oral rehydration salts? Is it by prescription, or can it be purchased anywhere? Thanks.

 

[IrisRV]

Does anyone know which treatments he's planning to test in this funded study -- phenylephedrine, IV saline, ORS, or all three?

A quick glance at the abstract of his phenylephedrin paper makes me wonder if the entire effect is simply raising BP. Anyone know more?

Increasing blood pressure with phenylephrine can alter CBFv.

It's good to see he's looking at patients with POTS and those with NMH. It seems the treatment would be different with those different conditions. It will be interesting to see if he can get good results in both. I like that he's actually measuring blood volume rather than just going by symptoms, since neither POTS nor NMH guarantees low blood volume. I want to see an increase in blood volume in patients with distinct low blood volume, not just a small increase of blood volume in patients with normal or near normal blood volume.

Do we know yet what ME/CFS definition he's using to identify patients? After all, POTS and NMH patients my have the symptom chronic fatigue without having ME/CFS. I hope he's actually got well-characterized ME/CFS patients who also have POTS or NMH.

Should be interesting! I hope we see more studies on potential treatments. The big picture is important, but we need some treatment while they're working on the causal and contributing factors.

 

[Cort]

Cort, thanks so much for this news. I have been diagnosed with POTS and NMH and have been helped by saline infusions in the past.
My question - how does one get the oral rehydration salts? Is it by prescription, or can it be purchased anywhere? Thanks.

That I am going to look into. I'm pretty darn sure that it's easy to make though. I believe WHO made something that people in primitive circumstances can make. I actually think I know somebody who used this stuff and it was good for him.

 

[Cort]

Does anyone know which treatments he's planning to test in this funded study -- phenylephedrine, IV saline, ORS, or all three?

A quick glance at the abstract of his phenylephedrin paper makes me wonder if the entire effect is simply raising BP. Anyone know more?


It's good to see he's looking at patients with POTS and those with NMH. It seems the treatment would be different with those different conditions. It will be interesting to see if he can get good results in both. I like that he's actually measuring blood volume rather than just going by symptoms, since neither POTS nor NMH guarantees low blood volume. I want to see an increase in blood volume in patients with distinct low blood volume, not just a small increase of blood volume in patients with normal or near normal blood volume.

Do we know yet what ME/CFS definition he's using to identify patients? After all, POTS and NMH patients my have the symptom chronic fatigue without having ME/CFS. I hope he's actually got well-characterized ME/CFS patients who also have POTS or NMH.

Should be interesting! I hope we see more studies on potential treatments. The big picture is important, but we need some treatment while they're working on the causal and contributing factors.

He's also looking at "neurovascular coupling" whatever that is

I know phenyl increases BP but I think it's more complicated than that. Don't know for sure.

 

[Karen PT]

This is great news!
Hard to imagine ORS being drinkable- bleck.
Would like to see how ORS stacks up agains SaltStick and water.

Actually, it's not bad. I've made it before. You can add some lemon juice to make it taste like slightly salty lemonade. Next time I make it I want to add unsweetened Kool Aide to it.

 

[Karen PT]

Cort, thanks so much for this news. I have been diagnosed with POTS and NMH and have been helped by saline infusions in the past.
My question - how does one get the oral rehydration salts? Is it by prescription, or can it be purchased anywhere? Thanks.

You can buy packets on Amazon. I used a packet for the ratio to make my own. I got the components on Amazon as well. You can find the "recipe" on the WHO website. You want the newer one that has less sodium in it.

 

[Karen PT]

Cort, where it says "Medow states in the grant that WHO's oral rehydration salts rival the effectiveness of oral infusions in increasing blood volume",
I think you mean it rivals the effectiveness of IV infusions.

 

[Hello!]

Actually, it's not bad. I've made it before. You can add some lemon juice to make it taste like slightly salty lemonade. Next time I make it I want to add unsweetened Kool Aide to it.

How did it's saltiness compare to that of Gatorade?

Did it do anything for you?

 

[Hezza]

Dr David Bell was able to effectively raise patients blood volume w Florinef & salt loading but he could not achieve the same results in how his patients FELT when compared to daily IV saline. I'm eager to see Vanderbilt's 10 year study on this due to be published in July. Btw got a port & have been getting 2 liters 3x week, prescribed by PCP & covered so far by insurance. It has helped give me some life back. And my NP is very excited in my checkups. I am actually absorbing nutrients! For the first time in 15 yrs of trying natural route things are actually beginning to work.

 

[Cort]

Cort, where it says "Medow states in the grant that WHO's oral rehydration salts rival the effectiveness of oral infusions in increasing blood volume",
I think you mean it rivals the effectiveness of IV infusions.

Whoops!

Thanks for pointing that out!

 

[dee]

hey cort, I used to suffer from POTS and would throw salt in my mouth then drink it down and a couple min. later I would feel better BUT now I have high BP. now I don't know what to do because i'm on water pills and 2 different meds for high BP. I think i'm between a rock and a hard place?

 

[Cort]

hey cort, I used to suffer from POTS and would throw salt in my mouth then drink it down and a couple min. later I would feel better BUT now I have high BP. now I don't know what to do because i'm on water pills and 2 different meds for high BP. I think i'm between a rock and a hard place?

Darn! I think you may be....Wish I had an answer for that.

 

[IrisRV]

hey cort, I used to suffer from POTS and would throw salt in my mouth then drink it down and a couple min. later I would feel better BUT now I have high BP. now I don't know what to do because i'm on water pills and 2 different meds for high BP. I think i'm between a rock and a hard place?

Have you tried any meds for low blood volume? Have you been evaluated for hyperadrenergic POTS?

The hallmark of this form of POTS is that in addition to orthostatic tachycardia they will often display orthostatic hypertension,

See also this for more info and treatment options for different types of POTS.

 

[Cort]

Have you tried any meds for low blood volume? Have you been evaluated for hyperadrenergic POTS?

See also this for more info and treatment options for different types of POTS.

The link for "this" for is not coming through for me. Can you give it again?

 

[IrisRV]

Try this: http://circ.ahajournals.org/content/117/21/2814.full

It's an article by Blair Grubb