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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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What now little man

Quilp

Senior Member
Messages
252
Almost six months since the ''Manuscript is almost finished''

There are many things I don't know, but I do know this :- They are comfortably detached from our suffering. They don't care, they really don't. I don't care what Avi Nath says. I know Brian Wallit thinks this illness is psychosomatic. He has said so in the past, and when did you ever hear one of those change their mind ?

How can you say on May 4th 2022 that ''we have several treatment options in mind'' and then hear nothing for almost a year ? That's cruel isn't it ?

Perpetual misery has taken away more than I thought I had. Even a cure cannot save me now, but I want to get to the finish line. I want to see what is on the other side of that mountain. I just want to feel like me again. Is that possible. I became poorly when I was 24yrs of ago. I am now 52yrs old. Imagine making it to old age and then having to fight all the ailments that come with old age, and this illness as well ? There is no possibility of me being able to walk through that fire.

I can barely walk. I feel like I might pass out at any moment. Yet still I stand. I just want to know. I just want to be there. Those ''consistent biological abnormalities'' are mine, but I want to share them with the world. I want them to know what I did, and how I fought. Twenty eight years. They can only possibly imagine.

I recently looked at my diary of some twenty five years standing : March 6th 2008 -'' all hope rests on Montoya's findings due to be released in August'' Remember that ?

Come on Avi Nath. If as you say, ''Covid has pretty much taken over my life'' perhaps you can give us the chance to live ours once more. Release those results. The trial was ended early almost three years ago. In no world is that acceptable. If you really cared you'd step down and let others take the lead.
 

Quilp

Senior Member
Messages
252
I have managed to find an email for the NIH. I have emailed my concerns this morning.
This study is huge. Avi Nath has described the findings as ''fascinating''. These results cannot be ignored. Why can't they be released so that others may begin to look at clinical trials using existing drugs. How frustrating. There are drugs out there that can help us, i'm convinced of that.

So the results are released in December 2023, say. Then they talk another year about stakeholder meetings, troubleshootings, more meetings upon meetings and more workshops, management strategies, and then talk again about starting a trial, maybe next year ( which will undoubtedly be delayed ) Then over here in the UK we have NICE ( thou shall not pass ) which takes forever to approve any drug even if it's licensed already.

Ok, so now we're in 2025 and a drug comes up that might be useful, but ''more funding'' is needed. Then the trial is discontinued because only 98% of people got better, Now it's 2030 and.........we have all died.

These results have the capacity to change our lives. So many trials out there have found this and that. Look over on PR and see all the one and done trials. Fifteen years and we keep chasing our own tails with these trials. Look back on old Youtube videos about, ''Breakthroughs'' that never were.

This is why we need the results to be released as a matter of urgency. So many lives are being lost every day. I just cannot understand the justifications for not allowing a preprint . And if not, at the very least release those results as soon as possible. This isn't as soon as possible. It feels like we'll get round to it when we can, once we're done with Covid.

Good luck everyone. 2023 could be the first time.
 

Gijs

Senior Member
Messages
697
I've been sick almost as long as you. I don't expect a cure for our disease. If I speculate. I think Nath somehow found a way to diagnose neuroinflammation. The fact that this study has not yet been published may also be because he wants to be very sure. He has a reputation. That's why I think he found something.
 

JES

Senior Member
Messages
1,340
There are probably existing drugs that can help us. Developing a new drug is somewhere around a ten year process from start to finish, so that's not a great option. The good news with existing drugs is that they can be prescribed today, in theory. Maybe one of us will one day hit the jackpot with something new they have managed to trial. To get something FDA approved for ME/CFS will still take quite a few years, no doubt, regardless if the drug already exists in some form.

Four years ago nobody in ME/CFS circles knew anything about Abilify and its potential use in ME/CFS and now at minimum tens of thousands of patients around the world have had a go at it. It's not a cure, but then what chronic disease has a medication that can be called a cure? Not many. ME/CFS is potentially curable as there isn't any obvious permanent damage unlike in some other diseases like MS where you lose nerve function permanently. With ME/CFS it *could* be as simple as toggling the disease state on/off, but in practice there might not exist a medication that can really do that.

So while things seem to be developing very slow (which is unfortunately the status quo for us ME/CFS patients), there can potentially be quick progress made around a discovery if the stars align.
 
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Quilp

Senior Member
Messages
252
I've been sick almost as long as you. I don't expect a cure for our disease. If I speculate. I think Nath somehow found a way to diagnose neuroinflammation. The fact that this study has not yet been published may also be because he wants to be very sure. He has a reputation. That's why I think he found something.

He has ( Avi Nath ) said that these results will ''move the field forward in a big way''. ''This will help patients''

They are pretty big statements - statements he made nine months ago. How sure does he need to be ? I just don't understand the delay.
If and when I receive a reply from the NIH I will let you all know.
I just want to be able to read a book, watch tv, go for a walk. And most of all, I want this pain like no other, to go away.
 

ruben

Senior Member
Messages
311
If we're in the UK then, are we entitled to go to our GP and request Abilify and they'll happily let us give it a go. Or is it not that simple.?
 

lenora

Senior Member
Messages
4,992
Hello......I've had the joy of this illness (and plenty of others) for probably 35+ years now. I signed up for medical trials while I was still fairly young and yes, meds eventually were discovered for us. I can't tell you what it was to go from absolutely nothing to an old medicine that had been used for seizures for years and years prior to that. it did remove the pain and later pharmacies (compound pharmacies) with a doctor's prescription could put together all sorts of drugs in a tube. These were also a miracle. Even the OTC meds improved and I use a lot of them.

The original med was gabapentin, and the doses were unknown. Some of us could tolerate more and actually returned to work, while others far less (me). Actually, a lot of us lost our minds for a few mos. while the doses were adjusted. We stayed at home. It took 3 mos. for it to work and my mind to clear....very interesting to have a peep into the world of Alzheimer's. All the yellow post-its in the world didn't matter.

Later on I used one of gabapentin's children, lyrica and I'm on it to this very day. Do no expect any of these drugs to work immediately. Unless there is a very bad reaction, be patient and wait it out. Funny, as years later I developed two different types of epilepsy and now I'm on a third drug for epilepsy. One may be cut back in the near future.

So I can attest that drugs have come and gone.... I don't believe there will ever be a cure...but several meds that will help. Some people find help in vitamins, etc., and I still use them judiciously. Often the side-effects are more than a lot of people are willing to put up with. Still, that's up to the individual and I have been helped by many of the drugs that weren't heard of at the time I entered this world of illness.

Things keep changing as do the researchers who try very hard to determine the cause and effect of many things. Remember that they must get tired also....and perhaps a break is actually good for their thinking in this matter. The old "Aha theory."

Don't give up. If abilify is the new miraculous drug....fine, try it. If others have tried it earlier (and I know they have) find out the pitfalls they experienced. Your life will go on....just find pleasure in what you can. Lenora
 
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JES

Senior Member
Messages
1,340
If we're in the UK then, are we entitled to go to our GP and request Abilify and they'll happily let us give it a go. Or is it not that simple.?

This was discussed somewhere on the other ME/CFS forum. The answer is it will most likely be difficult, quite a bit more difficult in Europe/UK than in US unfortunately due to stricter practices of off-label prescription. I had success getting LDN from UK, but since Abilify is an antipsychotic, most doctors tend to view that as a "strong" drug and don't understand the concept of low-dose having a different impact.

Your best chance of getting a prescription is to find out a doctor who has already been willing to prescribe it or similar drugs off-label for ME/CFS patients or get it from a psychiatrist. I managed to get it the latter way, but not easily.
 

Quilp

Senior Member
Messages
252
If we're in the UK then, are we entitled to go to our GP and request Abilify and they'll happily let us give it a go. Or is it not that simple.?

I think this is one of the reasons why we need to know those ''consistent biological markers'' Avi Nath is saying he's found. I am so poorly I would take anything. But what if anything made me worse ? My life is hanging in the balance, and yet despite my desperate perambulations on here I think we are close to the big breakthrough.

I know we have been here before, but what if Avi is true to his word ? So we have the markers, and then a clever biochemist says, ok you need A, B and C. It isn't a cure, but it mops up a lot of the downstream effects of this illness. We can live a life worth living. Restrictions, limits, but no pain and we can do and manage the basics. I think I will settle for that. In fact I would love that to happen

Do I take a chance on abilify ( i'll camp outside the GP's surgery if I have to ) only to get worse, or do i accept that my life is hanging by a thread and try something, anything. Given that I believe we are on the cusp of something truly big, i am going to hold out before trying abilify.

God this is so hard.

Oh and when this study is released, it will be two fingers from me, to all those b8888ds that denied me the help I needed, when I needed it most.

I know I am angry and bitter. I am not the man I used to be. My personality has warped into someone I don't like very much. I hope I can forgive myself one day, but only I know what I have been through and what I am going through now. How did I manage to keep it together after all these years.
 

JES

Senior Member
Messages
1,340
Also just to be clear, I don't view Abilify as the major breakthrough in ME/CFS treatment, rather something that unexpectedly turned out to help some people. The biggest issue with Abilify is that it more or less stopped working for I would say a majority including the people who experienced large benefits initially, so I would not beat myself too hard about not trying this one at current time.

This "stopped working" is another big problem with ME/CFS treatments. Not only does the treatment have to be effective, but it's of little practical use if they find a drug that works let's say for a month or two during some trial observation period, but then loses its effects over time.
 

lenora

Senior Member
Messages
4,992
Hello @Quilp.......Before my neurologist passed away, I asked him about abilify and he didn't want me on it. Reason being that lyrica (or parent, gabapentin) was helping me, so why tinker with it. This was a man I'd know for more than 35 years, he knew a lot about this illness and so I just dropped it. He was right...why tinker if it isn't needed.

Now you're situation may be far more different than mine, I don't know. Have you ever tried gabapentin, lyrica or even the third drug from that generation? It does take time, just like I said....but while I still have bit of pain (blame my fractured pelvis and vertebrae), I'm not in enough pain to look for something.

@JES is quite correct in that with most people abilify stops working at some point...with some it never works at all. I'd be the first to say "Get it if you can." However, if it isn't readily available do try something that I mentioned. As I also mentioned before, you can get a physician to write a prescription for a combo of pain relievers that are then put in a tube and have to be carefully stored b/c the composition isn't last long. This tube is sold through what is known as a compound pharmacy in the U.S. It's great, but you need someone or at least a back type sponge to apply it. I find it generally lasts for about 6 hrs. or so. I can give the composition if anyone needs it even though I don't use it any longer at all.

Meds are being built upon all of the time whether we know it or not. Some of the old ones have been discarded or new uses have been found. The opioids don't seem to work for our pain, at least that's what I found and my neurologist confirmed. I was fortunate in that I had no problem in getting off them. Also, and I'm sure you know this, don't ever just wily nily quit using a medication. It may be tempting, but do it via your doctor. Sometimes you can go from one to the other...but that's because the composition is the same or similar. It takes a neurologist or someone well versed in meds to help make the transition.

You'll learn to forgive yourself. If you're anything like me, you won't even remember some of these years, just that they weren't great. Use ice....I still say it's a potent and safe therapy for reducing or eliminating pain.

You'll find ice packs (Ace in the U.S.) that are cloth covered and don't freeze as hard as a block in any drugstore. I wrap mine in a light cloth (tea towel will do it) and you can even place this directly over the spinal area....it then hits many different areas. I'll use it anywhere I need it. Just remember no longer than 20 min. on and then at least 20 off. I have numerous sizes....and they're all handy. You just refreeze them. They're one of my greatest friends. Don't worry if you fall asleep while lying on one....they tend to warm the longer they're on. At one time, that was the only help available and we had to use ice cubes....then Ace saw the market. Things change. I hope you'll soon feel better. Yours, Lenora
 

Quilp

Senior Member
Messages
252
Thanks Lenora. I have to say that matters here in the UK are very different in terms of trying to find a doctor that will even listen to you, let alone prescribe anything,

I think what I am hoping for from the NIH study are the data on the ''consistent biological markers'', to be released. Then we can understand why drug A works, but B might not.

I will never understand why this has taken so long. See my other thread, where the NIH are still unable to give a release date. Given how poorly we all are I find this shocking. I am coming round to the idea that rather than Long Covid being a real boost for us, it is proving to be a hindrance. Avi Nath has stated that ''Covid has pretty much taken over my life'' - then as lead investigator how can he be relied upon to help us ?
 

lenora

Senior Member
Messages
4,992
Well, Quilp, that's exactly what happened to us in the beginning (although we came along a short time later), and that was AIDS, which took over all research. No problem there, but I was hoping that the research data would filter down to us...and, as the same time, the data from MS.

No, I wouldn't say that all doctors in the U.S. are amenable to being nice people and actually getting to know their patient. I just lucked out and we happened to form a bond that we used for each other's purposes for many years. Also, bear in mind that it takes a few visits to get to know a doctor anyway. Just like making a friend. The younger ones tend to have more time to spend with patients....they're just starting practice and they don't have the same numbers that more mature doctors have. Bringing something personal into the conversation can also help....you simply never know. All personalities are different and we see this everywhere.

My new neurologist is never going to be the same as my old one. We don't have history on our side (and never will), but she did agree to a test I requested. Things have changed with our medical system since the days I began searching for doctors.

I know yours is a harder system and both were made even worse with COVID. We're still trying to find our new "normal."

Really, it depends on your needs at the time....having a baby, a leg set, tonsils removed....both systems are just great. It's when we get off the more known path that troubles arise. That means educating ourselves as much as possible and finding some common ground with the doctor. I'm not saying it's easy, nor is it ever going to be so, but there are some doctors who are more helpful than others. Good luck. Yours, Lenora
 

hapl808

Senior Member
Messages
2,225
Thanks Lenora. I have to say that matters here in the UK are very different in terms of trying to find a doctor that will even listen to you, let alone prescribe anything,

I think most experiences in the USA are the same as the UK. Doctors willing to carefully dispense gabapentin and Abilify are in the minority, and most of us haven't been very lucky finding doctors willing to listen. Of course, we also often wait months for a specialist appointment and then pay hundreds or thousands to be dismissed after some cursory lab tests. I know of no country where ME/CFS treatment seems to be humane.

I know I am angry and bitter. I am not the man I used to be. My personality has warped into someone I don't like very much. I hope I can forgive myself one day, but only I know what I have been through and what I am going through now. How did I manage to keep it together after all these years.

Can very much relate. It's peculiar to be one person for decades, then find a level of suffering that warps you into someone else. The only good things is it gives me perspective on how some other people ended up the way they did. Not sure that's too helpful, though.
 
Messages
600
Messages
600
Ye this crap isnt moving fast enough. I think he should pull the study and do a preprint instead. Lipkin and Derya did preprints and now they are published and i dont see why thats a problem. Are we going to wait until the end of 2023 to see his results and then start a clinical trial? Just seems like wasting a full year for no good reason.

ME-action do something!
 
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