Whitney Dafoe Updates

This is great to hear! I don't care if it is Whitney's mom, sister, tom cat, or whoever helping to write this. It is fun! I am sure it is accurate! I don't want this superman taken away from his research and we want him protected from covid too. Thanks for the update. I really appreciate it.
 


Fereshteh Jahanbani is conducting a N=1 study on Whitney to understand why Ativan helps him so much.
She’s drawing blood from me immediately before Ativan, then at multiple intervals as the drug peaks in my system and slowly wears off. The last blood draw is 72 hours after injecting 2 or 2.5 mg Ativan. (I’ve recently upped the dose).

When not on Ativan I can’t tolerate human voice, or the sight of another person in my room, especially their face. (...) Moving even a muscle causes a terrible brain crash that makes me worse.
[...]
When I take Ativan I’m able to look at and interact with people, listen to them talk, and move freely, pantomiming to try to communicate to them. It’s still a terrible state to be in but it’s a huge improvement. And feels sooo good.
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Information about what Ativan affects must be out there. The mechanism of these Benzos must be well known by now. Or is it? I do know that many ME doctors in North America prescribed and still do, Klonopin. I am not scientifically familiar with the difference between these two Benzos. Many ME patients are addicted to KLonopin. If Ativan helps a very severe patient, shouldn't we then know what is being targeted by the drug? These are very old drugs. Shouldn't this give us some clue about the illness? Does Ativan affect the dorsal ganglia, I wonder. In the video Tom Kindlon released today, DR. Shepard says that in post mortems they found issues with the Dorsal ganglia. What issues? It is devastating that this illness is not being solved.

Whitney's pain and suffering is so hard to take in; il est si souffrant....

This horror must end. How many young people are to be sacrificed.....
 
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Mij said:
Are there any other ME pts who benefits from Ativan?
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My initial symptoms were pretty bizarre, mostly neurological. It became significant with months of headaches and dizziness, then sudden loss of consciousness, dizziness, shaky on my feet, lightheaded, tachycardia and whole-body shaking as if I were hypothermic. I had trouble focusing, could barely pay attention to things since anything faster than a particularly lazy sloth was moving too fast for me. Literally lost the ability to read for weeks, I could not process the information, would forget the beginning of a sentence before I got to the middle. Language barely made sense.

It felt like I had an electric storm throughout my entire body. Or like being low-graded electrocuted. Everything was buzzing. Ativan did wonders for that. I only had one prescription and never tried it after so I don't know if it would have helped for the other symptoms. That low-grade electrocution type symptom is still there when PEM hits so maybe it would help but I've given up on medical care until there is a huge shift in attitudes so I guess that will remain a mystery.

But the effect was huge. Worth knowing why. It could be a useful tool in routine health care, if severe patients, or hell even moderate patients, can be at least somewhat capable of expressing thoughts during a consult. Which seems important but whatever I'm not a Sir Regius professor of something something so what the hell do I know? Mix that with telehealth and you completely access to health care, but not without a complete paradigm shift, obviously, as looking better than we are is basically a double-edged sword that is immediately turned on us. So that would only work with competent doctors who understand the illness.
 
RE: Benzos

(Benzos modulate GABA receptors. The GABA channels bring then more negative charged chloride ions into the nerve cell when the receptor is bound at. GABA are distributed all over the brain but especially in some areas in the basal ganglia. Positive charged sodium and calcium ions come into the cell to induce action, so chloride is principally a counterweight. When positive charged sodium ions come into the cell, as well positive charged potassium ions are released out of the cell - so they are a counterweight as well. I think chloride ion currents could already be associated with certain diseases, but with potassium there was 20 years ago, at least, no specific association known. A fifth player is magnesium which blocks the receptor for calcium currents until a certain sodium influx has been achieved.)

Four years ago I had the idea to bring chloride into my brain, though no sodium. So I bought magnesium chloride. When I figured out (can´t remember anymore how) that it needs hydrogencarbonat to enter the brain, I took "a bit" and it made woosh, and then I did it with only a drop of MgCl in water with a vitamin effervescent, and it worked for three days. I think I have taken three drops (from 33g in 1l, I think) a day.

I could rediscover it now with new insight in terms of application and some other stuff hopefully making up a whole (small amounts upon avoidance(s) and in a constructing manner), without short supply.

In my view the pivot is in neurology, and it may actually be a geometrical problem in a nonspecific structure. Too much of action in one area and too less connection overall may mean sensitivity, pain and inability. Delayed symptoms and fluctuating illness were understood. The question must also be "What do the triggers?" Could the triggers induce a breakdown of synaptical network?

It is known that benzos seem to induce unpleasant long term changes in synaptical action. If chloride currents are part of the problem in ME, and this is here in ME and elsewhere not surprising, it would be nice to be able to show this, of course.
 
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Whitney's friend asked that I pass on this message:

I'm a carer for a PWME and I have the honour and pleasure of knowing Whitney and his family personally. I would like to emphasise that Whitney is indeed using his precious time on Ativan to painstakingly pantomime long posts to reach out to the world. He desperately wants to raise awareness about this horrid illness and help other patients.

I know this because on several occasions, I have been the person to whom he dictates. He has told me that he spends his time between Ativan sessions, carefully crafting his messages and that he has a lot to say.

There is no hidden agenda in his posts, he is severely ill, he is desperate to get better and he wants his father's research funded so that he can get there. Dr. Davis spends all his time either caring for his family or working on research.
 
Trish said:
I would assume Ron had checked it for accuracy, and that Superman is Whitney's choice of word to refer to his dad. It's a facebook post from Whitney, not an official OMF publication, as I understand it.
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Yes that's my feeling exactly. When you consider the hours and the effort Dr. Ron Davis is somehow fitting into this endeavour, day in day out, year in year out, and with the sincerity that he clearly shows towards pwME, I think it would be hard for those close to him not to think of him as something of a Superman.
 
Barry said:
Yes that's my feeling exactly. When you consider the hours and the effort Dr. Ron Davis is somehow fitting into this endeavour, day in day out, year in year out, and with the sincerity that he clearly shows towards pwME, I think it would be hard for those close to him not to think of him as something of a Superman.
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Yeah I hear you on that, I just find it concerning that in some sections of the ME community there's a practically religious attitude of "have faith in Ron" - but that's not Ron's fault.
 
Sarah94 said:
Yeah I hear you on that, I just find it concerning that in some sections of the ME community there's a practically religious attitude of "have faith in Ron" - but that's not Ron's fault.
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Yes I agree, and I wasn't getting at you Sarah if that's how it seemed. Adulation is not what it's about, good science is, and that's what Ron Davis is about.

I think part of the trouble is that funding is very hard to come by, but essential for Ron's work to continue, so the marketing for donations is rather garish sometimes. But I forgive them for that in this case (I rarely do in most cases!), because I believe in what they are doing. That does not mean I have the scientific knowledge to know if they are on the right track (I don't), but I do very much believe it is in everyone's interests to try and help them persevere - I get the feeling they are likely onto something important. Whether it will solve as much as is hoped for, who knows, but I would be surprised if their efforts did not contribute significantly to the sum total of understanding about ME/CFS.
 
Mij said:
Are there any other ME pts who benefits from Ativan?
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Ironically I was prescribed this in 1976, as the GP believed I was mentally ill. I actually had ME, but wasn't diagnosed for another 20-odd years.

It helped a lot with the relentless nausea I experienced at the start of the illness, which was later found to be due to gastroparesis. Obviously, the drug did nothing to solve the underlying problem, but made life more bearable whilst it was still undiagnosed.

I was 17 when Ativan was first prescribed, and had no idea that it was highly addictive – I was never told that at any stage. I had to keep taking it for several years, until I weaned myself off it incredibly slowly over the course of many months (which was pretty nightmarish).

Apart from the nausea, the only effect it had was to blank out several years of my memory and make my fatigue immeasurably worse. I had a long-lasting ME remission when I finally got it out of my system.

I've only ever suffered from severe ME for limited periods as the result of taking a steroid meds that wiped out my adrenal function, though, and always recovered when the med was stopped – I'm not in any way comparable to Whitney.
 
@Kitty

Ugh, they never tell us how addictive this can become. I was also prescribed Ativan at onset for a short term for nausea from the extreme vertigo I was experiencing.

I don't have anything comparable to Whitney's illness.
 
(I also hope maybe there might be some more research into Abilify as well as the lorazepam? It really intrigues me that these drugs could possibly have such an effect.. especially on severe ME. If more research is done then we can know why/how it works & how that relates to the condition that is ME, & if these drugs help.. then it’s another possible treatment option,)
 
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Finally, reading the facebook post from Whitney. It's very strange, I share some similarties, just I'm heck of a lot better (and I'm doing very poorly!). Adrenaline can be an asset for me as does ativan. I rarely crash from adrenaline, but it's possible others do, and very badly. I think I have read that on the forums. If I crash from it I tend to recover fine with rest and a dark, cool room.

I had read, years ago, someone benefit from Abilify + Lamictal combo on reddit, begun immediately after the onset of the me/cfs that gradually led to a recovery (something like 1 year). At the time I wrote it off as a probable PVFS, which it still may be. But, this does peak my interest a bit. Abilify is a bit of a strange anti-psychotic as far as my memory serves me. It may be worth looking into. Cortef is probably too risky a drug for most to try, esp. if hormones are all stable as is.

Edit: a minor case report on abilify ameliorating gastroparesis associated with a "a microdeletion in the 1q21.1–q21.2 region". I have no idea what that is or if it's covered in a WGA, though google tells me only 11 people have had been detected with it. https://casereports.bmj.com/content/2018/bcr-2017-223231
 
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