it seems ron davis may have a new potential treatment

[bensmith]

Look for/message mitoman on here, its his group.

 

[lenora]

One of the huge problems we've had right from the start is the lack of research funds. No government is willingly going to give this money unless super-large groups are affected, or some other research into another disease proves useful. Thus far, that hasn't happened.

There are some very good minds on the Forum, perhaps you can come up with something that we couldn't have all those years ago. There are so many, many layers to this illness and one cure will never be it for all (my own personal belief after all these years).

The computer has undoubtedly changed the way many things are done, research included. That's good...and bad. It promises perhaps more than it can deliver, at least at this time, yet it will take only one great mind to figure it out.

I feel the more theories that are thrown at researchers, the less our chances become. Anyone would get confused about which path to take under present circumstances.

And please...make donations for research. Ask your family (as gifts to you for b'days and holidays), do what you can even if you think it doesn't matter. I promise you this much: No group has ever voluntarily received large amounts of govt. funding (unless mass illness) until a proper group appears before the NIH, Congress to give testimonies, etc. Look into the VA and see the great work that is being done there....that's kept silent, but it's happening. Be thankful for all those who are working for us....and let them know. All people need to hear even more good than bad, especially if they've put their lives on the line.

Sadly, we're not the only orphan disease out there today. Not at all. Yours, Lenora.

 

[Rufous McKinney]

One of the huge problems we've had right from the start is the lack of research funds. No government is willingly going to give this money unless super-large groups are affected, or some other research into another disease proves useful.

Right now we have: $1.15 Billion in the U.S. over the next four years (long haul/ME/CFS).

We should hug ourselves right now.

 

[max_yazhbin]

@Rufous McKinney, that $1.15B doesn't mean anything, they could always apportion the money to all sorts of research or whatever having nothing to do with ME/CFS just like they already do with the $40M annually and there is nothing anyone of us can do about it. No one of us is going to start our own community/economy/country/money and thus we are all hoping for better even though hope is not a strategy.

 

[Rufous McKinney]

that $1.15B doesn't mean anything

Well our researchers are pretty excited about it. See Ron Tomkins latest interview- OMF Science director.

and this article is pretty optimistic:

https://www.usnews.com/news/health-...es-fighting-chronic-fatigue-syndrome-see-hope

Francis Collins, NIH is maybe just blowing hot air- but it seems like they are changing their tune about ME CFS.

EXCERPTS:
"My hope would be that as we study long COVID, and look at those comparisons with chronic fatigue syndrome, we'll learn a lot about both of them," National Institutes of Health Director Dr. Francis Collins recently told members of Congress.

Collins added that the hope would be to find treatments for both, "because there's lots and lots of people with chronic fatigue syndrome who are still waiting for something that's going to help them."

...White House adviser Dr. Anthony Fauci has pointed out parallels, and the U.S. ME/CFS Clinician Coalition wrote a letter last year encouraging providers to consider ME/CFS as a diagnosis among long-haul patients.

Dr. Walter Koroshetz, director of the NIH's National Institute of Neurological Disorders and Stroke, says the NIH does not allocate a set amount of money for specific diseases, but that "research supported through the NIH grant system is primarily investigator-initiated, and the amount of research funding for a particular disease or disorder depends on the number of meritorious grant applications that the NIH receives and is able to fund."
He adds that a working group has been looking to find ways to bring new investigators into the ME/CFS arena, and that experts expect the NIH's $1.15 billion long COVID initiative – dubbed PASC, for Post-Acute Sequelae of SARS-CoV-2 Infection – to prove valuable on the ME/CFS front."


Its likely that some folks with long haul COVID do have physical damage unique to the coronavirus in question, but that we will also learn more about what is triggering some of the immune and neurological aspects.

Hope is good while Actions Take Place.

 

[Rufous McKinney]

research supported through the NIH grant system is primarily investigator-initiated, and the amount of research funding for a particular disease or disorder depends on the number of meritorious grant applications that the NIH receives and is able to fund.

I do find this statement a bit puzzling. So its the interest of research investigators? and not driven by need?

Presumably they fund research that has merit. And merit should reflect some needs.

 

[max_yazhbin]

not sure when I will trial suramin yet as I am thinking I need to get rid of the cesium/thallium from chernobyl first to try to give my mitochondria a chance to heal themselves.

 

[raghav]

It all boils down to payment of disability support. I have been saying this all along. If NIH, FDA and the US government accepts that ME is truly disabling then they have to shell out a lot. It boils down to that. That is why vested interests play up GET / CBT once in a while and throw in alternative therapies like yoga and tai-chi.

In the interview of Ron Davis and Janet Dafoe Janet said CBT will help in relieving stress and hence can give some amount of energy in the process of not worrying about the future. Then Ron talked about abilify (which is a psychiatric drug). CBT + Ability = GET is what weasels will say by connecting the dots. Janet says that in good intention. Most of the time I am scared sh*t) of how I am going to generate money for my monthly expenses in the near future. This is draining my energy a lot. We dont have disability support or medicare in India. I was a tax payer for a long time but I dont get even food coupons. I am on my own and I have to feed two more mouths. Sorry for rambling. But the point is dont talk about abilify in the sense of psychiatry and dont mention CBT please. They will go for our ba***.

Please elucidate the mechanism of abilify other than neurotransmitters and explain the biochemistry behind it at the earliest. Dont goof up like not knowing the accuracy of the mass spectrometer at Stanford over which you wasted almost 6-8 months and then said "Hey this specgtrometer is not accurate enough to measure kynurenine. I am still upset how a world renowned scientist like Ron Davis did not look at the nameplate of the spectrometer where its resolution or accuracy or error percentage will be given. Even a 100 dollar mitutoyo vernier caliper mentions the least count (accuracy) to which it is reliable. So please get your act together and think like engineers and not scientists when it comes to measurements.

As Kelvin said unless you measure something you dont know anything about it. He implied measuring it accurate enough so that you can then do scientific analysis. If you dont know about any equipement you are using get hold of the Electronics and Instrumentation department professors at Stanford. They will guide you in that aspect. Hoping to see actionable information from you guys. All the best.

 

[bensmith]

Hm thats a reasonable theory. Although the government isnt bound by logic. For example you can be disabled in the military and get called to duty. Or denied gov benefits etc. although i lean to agreement with you.

 

[lenora]

Hello Everyone....I can distinctly recall receiving the earliest of the polio vaccines (it was discovered at the University of Pittsburgh) and we lived very close to that area. Parents and children lined up for hours and were overjoyed that this "miracle" existed. I wasn't aware that our first outbreak of polio was in Vermont in 1897. I wonder how much the polio vaccine was tested....or was it also considered experimental like so many today?

The very early history of CFS/ME was hindered by AIDS and MS. Not that those diseases didn't deserve attention, I'm not saying that in the least. In the case of MS we honestly thought some of the research would filter down to us...AIDS too, when one considers that it was also a disease of immune system gone haywire. Remember that the govt. fought very hard to deny these people their research $$, but they did have a huge volunteer organization with many well-placed individuals who were able to work for the funds. Besides, the causes were so unknown at the time....how far did/could it extend?

So then we came along and the last thing the govt. wanted to hear that there was another autoimmune disease on the horizon. Early cases of CFS/ME were turned down for Disability, that's true...I was one of them, and to this day have never received one dime. I had to prove blindness first and travel to Austin, TX (even though extremely ill) in order to be told that indeed, I had to be blind first. I made a point of later helping others collect what was rightfully their's and I was fortunate enough to be able to make-do without help myself. Pure luck!

So that's always been another hang-up, hold-up....whatever you want to call it, the lack of volutneers on our part. I suppose that looking back we could have asked the AIDS coalition for help, but who would have thought of it? Like I said, we thought research at the very least would be helpful.

So now we're in a position to team up in the Long-Haulers....and we should take advantage of this situation, even if there does become a divergence in our paths. Take anything we can get now, take advantage of all people who will put themselves out there for our gain (and many have been attacked) and just look at the greater good. Donate as much as we can ourselves, ask our relatives....please. I know a lot can't afford it, but even $5 shows that someone is suffering and needs help. Numbers matter.

We should all spend time reading more about the history of viruses in our countries....like I said, I was broadsided by the Vermont outbreak, certainly knew about the Royal Free Clinic outbreak in London, but how many know about the doctors and nurses who were affected by this strange seemingly viral illness? The original polio victims are now rapidly declining in number....most lived their lives in iron lungs, braces and using special elbow crutches. I consider myself very fortunate that I wasn't among them....I had a few more years of grace before I was befallen with other ills.

@max_yazhbin......While it's true that all of that money won't be used for our research, the fact is that it's more money than we've spent in the years since AIDS. For that, we're grateful.

As far as meds being used for cross-purposes, this is becoming more and more common in not our just our area, but in plenty of others today. Nothing is ever optimal and if a truly holistic approach works, then it's wonderful for those who can utilize it. However, we can't stop there or we wouldn't have made any progress whatsoever.

I can't begin to tell you the number of people I know who are being given chemo drugs for an illness that has zero to do with cancer. Personally, I'm grateful to them because while some may fail, others will be commonly used (as we're now seeing today). Nothing is foolproof and we have to accept that if we're to have any sort of treatments at all. It's how medicine proceeds and how illnesses are cured. And yes, there are failures but there were no real guarantees to begin with. We're just a hopeful people...at least for the most part.

I hope that India at least has some Food Banks so that people don't needlessly starve. Very sad state of affairs if that occurs. OK....heading to bed. Yours, Lenora.

 

[max_yazhbin]

@lenora we will have to agree to disagree, by we I mean you and me, and the ambigious we that you use in your response to me is a terrible way to argue. Do you really represent all the people who are grateful in this context? It is easy to see the money spent on ME/CFS research, it is hard to see the damage caused by government inflation and all sorts of other incentives created by the government that destroys peoples health and doesn't fund researcher. Think employers selecting insurance instead of people being direct customers. Think Bastiat.

The issue I am bringing up is you, any of you, as an individual are running an experiment with your health. I am consciously experimenting on myself in an attempt at a cure because I worked as a researcher, have some understanding of incentives, know that most research is complete bullshit, know how to read doctors books, research papers, etc, and know that most of these researchers, doctors, etc aren't working as smart and then hard as they could be. They won't be out of a job if they don't find a cure, in fact, the longer this problem persist and the longer their grants, the more money they will receive.

Very few have the heart and intelligence of an Elon Musk and that applies in this field of health.

Hope is not a strategy, that is why I am taking it upon myself to find a cure for me. So far, it has resulted in a cure for my lyme disease, a cure for my covid-19 infection, etc. I am not stopping anyone from waiting for the researchers to help them but I am not waiting for them either. And I am certainly not relying on NIH or another form of government funding of institutional research whereby science still has the reproducibility crisis problem.

 

[Alvin2]

Instead of speculating when is Dr Davis next speaking, perhaps someone should simply ask him what Whitney was talking about in the first post of this thread?

 

[dylemmaz]

Instead of speculating when is Dr Davis next speaking, perhaps someone should simply ask him what Whitney was talking about in the first post of this thread?

we have been doing this. we did get a response this morning from whitney when asked about the testing. he said “they did an experiment on me to learn more and it made me worse temporarily and i’m just starting to recover from this. i hope to start treatment soon. i can’t say more.”

 

[lenora]

Hello @max_yazhbin......No, I'm not after an argument especially on a public forum but I do believe that there is the word gratitude that should be used more often than it is.

You may be younger and better educated than I was (although I was an RN at a time when you really worked for it), but I chose not to stay in that field b/c of the long hrs. (which I thought caused my sleep problems! Not so, as it turned out). So my point is this: You're of a newer, younger generation and it's not just up to the researchers to get involved, but also you, yourself. Put forth an agenda, use it....try to make some sense of what we're facing. I would like you to understand that all those years ago we were faced with nothing....no help of any sort, including an understanding by us, our families (and my mother, etc., never knew how ill I was), so we had to start from nothing. All things considered, we didn't do too bad, and I'm proud of that.

I've been involved from the beginning with many groups, including the Syringomyelia group (which is an illness I have....it's under the name of ASAP), had surgery for it and then Arnold-Chiari Malformation. Understand that we had to find doctors, there were no lists of any sorts, things came by newsletter (when someone was well enough to do one) and by phone. Surgery for some of it was experimental and I had it, so I understand that side of life. It was a choice I had to make and I did.

Little by little phone calls included other countries & we even tried to help people in them. We did what we could for the time and place. And yes, researchers played a role in that and we were grateful that they took an interest in us b/c no one else would...and that's the gospel. Understand also that there were many kind doctors who tried to help, but just didn't have the knowledge. And yes, I'm also a victim of CFS/ME/FM....just as all of you are. My life as I knew it was taken away, my family's and without changing myself, I couldn't help change anything else. My thoughts only.

We're all different personalities....that's being human. But for heaven's sake, pass on a compliment when one is due and yes, people do deserve that. If nothing else, be grateful for the bed you're able to go to each night, the food you eat, and a roof of some sort over your head. Don't blame researchers for failing to find a cure for a complex problem.

You're quite correct in stating that I don't know the inside world of research work, everything is made up of a hierarchy of rules and superiority....especially government entities. I still say this is more money than we've seen before....can't we just be thankful for that?

As far as Ron Davis goes, may I point out that the man is long past retirement, he's now 80, but his knowledge is superior. He doesn't do this for the money, but out of love. I don't know this family personally, I have nothing to gain by standing up for him, but they're all dealing with an extremely difficult situation. I know how I feel at my age, my husband's not what he was at 77, but his mind is constantly working and he is always involved in volunteer work (and no, we're not religious....it's just something you do).

I also know there are plenty of other researchers at different universities and as far as what you do with your body, it's your business. If you feel that you know what you're doing, fine...run with it, I'm not stopping you. However I am concerned about people who aren't as knowledgeable about this entire business of trying this, that or the other....we're not talking small doses of something and I'm simply asking that they think about what they're doing. I know that for me it has taken all these years to learn about vitamins, supplements and herbs....studying, not just reading what someone says. I happen to like learning, so that's fine, but as you know...and will know even more as you get older, things are constantly changing. Enzymes are being discovered at a fast rate, there are so many unknowns.

I'm from the world of yesterday and readily admit to that. I'm not even familiar with some of the research being done today and no, my brain won't let me learn. But you are, and you should take your rightful place, be proud of what you know and use it for the good of the many people who need it. Sometimes things are simply dropped in our laps, responsibilities that we may not have looked for, but they can also be gifts. So we each had/have a role to play and no, it isn't just the researchers who "have" to find a cure for this illness. People need so much help along the way....especially hope.

I'm not against trying....indeed, that has been our role in life, hasn't it? You sound quite ill and I truly wish that you'll find something else that will help put you on the path of recovery. Believe it or not, Max, I do wish people well....everyone. It's bad enough that we suffer, let alone making life more difficult for each other.

No, I'm not upset with anything you wrote....I'm sure there is plenty of truth in it, also. But it's not now nor ever will be a perfect world, populated by perfect people and perfect answers. We're just grateful for improvements, and increments....whatever they may be. Anyone is welcome to disagree with me....I would expect nothing less. No, I don't now or have never spoken for everyone. Be well. Yours, Lenora.

 

[bensmith]

Yes its been like this all year. Im suprised they need to make him worse for the med. heres hoping.

 

[dylemmaz]

Yes its been like this all year. Im suprised they need to make him worse for the med. heres hoping.

same here. it’s either ron was looking for some sort of paradoxical reaction or the testing involved some level of exertion. hopefully ron’s on to something. and hopefully this is a treatment with immediate benefits so if it works for whitney we can start it asap!

 

[bensmith]

For sure. At the very least they had high hopes if they were willing to risk whit like that.

 

[dylemmaz]

For sure. At the very least they had high hopes if they were willing to risk whit like that.

honestly that’s a very good point. ron is playing a risky game out here. must have had enough hope that abilify would bring him back as well.

now i’m confused even more as to what the medicine could be that whitney is trying. if ron can fix the fatigue i’ll be the happiest man alive. just wanna go for a nice walk in the woods

 

[lenora]

honestly that’s a very good point. ron is playing a risky game out here. must have had enough hope that abilify would bring him back as well.

now i’m confused even more as to what the medicine could be that whitney is trying. if ron can fix the fatigue i’ll be the happiest man alive. just wanna go for a nice walk in the woods

Hi @dylemmaz,,,,,,You may already be aware of this, but Whitney was only given very tiny doses of an abilify pill, never the full amount...at least as far as I know. Yours, Lenora.

 

[Boba]

honestly that’s a very good point. ron is playing a risky game out here. must have had enough hope that abilify would bring him back as well.

now i’m confused even more as to what the medicine could be that whitney is trying. if ron can fix the fatigue i’ll be the happiest man alive. just wanna go for a nice walk in the woods

Fatigue and PEM would be very nice.