Is there anything that’s actually promising?

[nryanh94]

I’m sure everyone is tired of posts like this, and if someone wants to delete it I guess go for it. But I’m in a really bad spot not and was just hoping to see if there is actually anything promising coming research/treatment wise.
It seems like they believe long Covid isn’t the same as ME, I gained tolerance to abilify after a couple weeks, and I went from being around a 9 during a remission down to about a 5. Just desperate for something to cling onto I guess.

 

[Boba]

I’m sure everyone is tired of posts like this, and if someone wants to delete it I guess go for it. But I’m in a really bad spot not and was just hoping to see if there is actually anything promising coming research/treatment wise.
It seems like they believe long Covid isn’t the same as ME, I gained tolerance to abilify after a couple weeks, and I went from being around a 9 during a remission down to about a 5. Just desperate for something to cling onto I guess.

I turned from a 9 to a 1 thanks to Covid. That‘s why I do believe they are the same. My Long Covid is nothing else than ME. This is why I think ME will profit from LC research. I hope this for everyone in this forum and in the world.

 

[ljimbo423]

I turned from a 9 to a 1 thanks to Covid. That‘s why I do believe they are the same. My Long Covid is nothing else than ME. This is why I think ME will profit from LC research.

I also think that most Long Covid is ME/CFS. Although some will be caused by heart or lung damage, etc. in those that were severely affected by it.

Hang in there @nryanh94. There is research for LC going on all around the world. I'm confident any significant findings in LC will also help those of us with ME/CFS.

 

[TiredBill]

I also think that most Long Covid is ME/CFS. Although some will be caused by heart or lung damage, etc. in those that were severely affected by it.

Hang in there @nryanh94. There is research for LC going on all around the world. I'm confident any significant findings in LC will also help those of us with ME/CFS.

I see it the same way. Very likely Long Covid is ME/CFS with the additional overlay of organ damage.

It is part of the reason I'm so adamant about being vaccinated. I would never wish to spread an illness that could cause someone to suffer a life-long illness that resembles what I (and we) have lived with.

I do have some hopes that billions in research will flow and that there may eventually be an efficacious science-based treatment protocol.

Not giving up hope. Deeply worried about those developing LC now.

Bill

 

[bensmith]

Sorry dude, i feel you.

 

[wabi-sabi]

I’m sure everyone is tired of posts like this, and if someone wants to delete it I guess go for it. But I’m in a really bad spot not and was just hoping to see if there is actually anything promising coming research/treatment wise.

We are here to support each other emotionally, so you can share whatever you need to share. We've all gone through times when we feel lower than others and we're here to get each other through that.

As other people have said, I suspect that long COVID and ME/CFS are the same and research will ultimately benefit all of us. One of the benefits I see is that some many people having long COVID at once make it more difficult to psychologize the illness not that our BP friends aren't trying). I also get the feeling that many of the long COVID people are bright, young things and they will help us in our fight.

 

[hapl808]

As other people have said, I suspect that long COVID and ME/CFS are the same and research will ultimately benefit all of us. One of the benefits I see is that some many people having long COVID at once make it more difficult to psychologize the illness not that our BP friends aren't trying). I also get the feeling that many of the long COVID people are bright, young things and they will help us in our fight.

A lot of truth here. I am critical as we know the medical establishment will do their absolute best to divide and conquer and psychologize all of it. But also it's 'nice' to see ME/CFS being taken seriously even if by a different name.

It's a good point that younger bright people who are struck with it are fighting because they have a name for their enemy and a lack of stigma that most of us never got. I hid most of my problems as just 'GI' problems, but I didn't talk about the rest because you just got categorized as a hypochondriac / crazy person / complainer.

But now even mild or moderate young people are shocked at what they're experiencing and are allowed and encouraged and supported when they are speaking out. My hope is that despite the medical establishment dragging their heels, that some research will help the long haulers who don't just improve on their own.

I do get frustrated, though, and think about where we could be if doctors weren't such arrogant and useless ballast. No matter how many times they get something wrong, they'd rather fight to preserve their ego than change their minds with new evidence and admit they don't and didn't know everything.

 

[Rufous McKinney]

I do get frustrated, though, and think about where we could be if doctors weren't such arrogant and useless ballast. No matter how many times they get something wrong, they'd rather fight to preserve their ego than change their minds with new evidence and admit they don't and didn't know everything.

I get really frustrated by the near constant reporting in studies, articles, public awareness campaigns- the endless obsessing on GET and CBT and bogus BRITISH issues that have nothing to do with Science in the United States.

Nothing about this illness is psychosomatic. Endless wasted breath.

I feel like this constant narrative pulls us back constantly.

A stuck record.....

 

[wabi-sabi]

But now even mild or moderate young people are shocked at what they're experiencing and are allowed and encouraged and supported when they are speaking out.

Yes, there is such strength in community action and not feeling like you are the only one. I remember when I first started getting sick, I just couldn't understand what was happening to me. It was crazymaking, I hope the long COVID people at least have the comfort of many people going through it at the same time and seeing that they are not crazy. That will help us too.

 

[christiankatz]

I agree, it's promising that it will be taken more seriously, so there will be more research and understanding.

I'm at about a level 2, but more like 1.5. If I could go back to being at a level 5, I'd try really hard to never overdo it, and maybe I'd still be at a level 5. So, just some advice is all I have.

I'm glad you posted this. We'd all like to know if there's anything promising, so thank you.

 

[heapsreal]

I’m sure everyone is tired of posts like this, and if someone wants to delete it I guess go for it. But I’m in a really bad spot not and was just hoping to see if there is actually anything promising coming research/treatment wise.
It seems like they believe long Covid isn’t the same as ME, I gained tolerance to abilify after a couple weeks, and I went from being around a 9 during a remission down to about a 5. Just desperate for something to cling onto I guess.

Improving and then dropping back is a big tease, frustrating. If abilify worked for you but stopped, it sounds like a rapid tolerance. Taking a break from it for a certain length of time and restarting it could help, but probably need to keep cycling on and off. Another thought is trying another drug in the same class and when/if tolerance occurs switch back to abilify.
All the best.

 

[Martin aka paused||M.E.]

I’m sure everyone is tired of posts like this, and if someone wants to delete it I guess go for it. But I’m in a really bad spot not and was just hoping to see if there is actually anything promising coming research/treatment wise.
It seems like they believe long Covid isn’t the same as ME, I gained tolerance to abilify after a couple weeks, and I went from being around a 9 during a remission down to about a 5. Just desperate for something to cling onto I guess.

I will try to answer this:
Yes, there is sth promising. Because we begin to understand the pathomechanism of ME.

But to say it very briefly: it all comes down to the question if we have enough money to do drug trials. Jarred Younger did an excellent talk at the overall disappointing IACFS/ME (many of you will know that I like this guy): He said now is the momentum to start drug trials. Because of the LC research. He has a table of quite promising chemicals and existing drugs he wants to study now (can't share due to copyright issues - sorry, lawyer). So, what is interesting: There is a TLR 3 agonist (CQ-07001) he wants to study that might work like Ampligen.

This is the second thing: The FDA approval for Ampligen... Let's hope it'll come.

Then the testing of the metabolic trapped yeast. I know this theory is not very popular here on PR but I think it could explain a lot; Whitney's strong reaction to the drug showed that they tackled the right system. They are now studying what went wrong so there is not only hope for many drugs to let the yeast grow again but also for this one still!

Then more from OMF: the Cyclophosphamide phase II trial which was overseen by many here https://www.frontiersin.org/articles/10.3389/fmed.2020.00162/full

Then we have Abilify, where it might not only work (and finally stop working) for many but gives us a glimpse into the pathomechanism in the future. Dr Bonilla seems to start experimenting with Amisulpride.

Then the overall understanding of pathogens and their role in ME:

- Chia does a great job here and Hanson did a really brilliant study everyone should read. I think here on PR is not enough attention to the enteroviral theory. I don't know anyone with ME who tested negative (below 1:160) on at least one enterovirus!!! Chia's work shows that this is not the case for healthy controls. In this matter, remdesevir and two upcoming antienteroviral drugs are interesting. Also IFN-lambda.

- environmental factors like mold get more attention in practice. This is good.

- Dr Markov's theory is interesting: I know now of three pwME who tested positive for bacterial overgrowth and one healthy control that was negative. A road worth investigating.

And much more like CCL-5 antagonists (maraviroc) and so on.

But: if you want fast results you have to test a few things on your own. That's the critical thing: time. Depending on how severe you are.

 

[heapsreal]

I know theres other threads on abilify but wondering if anyone has substituted seroquel when abilify poops out.
My experience with seroquel is mostly as a sleep aid used intermittently. Sometimes i get to a point where benzos arent working for sleep, it cant turn the brain off as theres 'too much inflammation'. I good seroquel sleep seems to reset the brain and then benzos start working again for sleep. Other than sleep, i couldnt see it improving me to a 9/10 but possibly we are treating similar but different buggered up physiology???

 

[Learner1]

I’m sure everyone is tired of posts like this, and if someone wants to delete it I guess go for it. But I’m in a really bad spot not and was just hoping to see if there is actually anything promising coming research/treatment wise.
It seems like they believe long Covid isn’t the same as ME, I gained tolerance to abilify after a couple weeks, and I went from being around a 9 during a remission down to about a 5. Just desperate for something to cling onto I guess.

Sorry to hear of your frustration. Personally, I don't think Abilify is much of a cure for ME/CFS or long covid. Not knowing the extent of what you've tried, these would be the things I would look into in your situation:

• Herpes family infections, particularly HHV6, CMV, and EBV
• Other infections, like Coxsackie B, enteroviruses, toxoplasmosis, and chlamydia and mycoplasma pneumoniae
• Immunodeficiency or immune dysfunction
• Autoimmune antibodies
• Anything weird in your cerebral spinal fluid
• Microbiome composition - viruses, parasites, inflammation, leaky gut, bad bacteria, lack of needed bacteria, oxalates
• Nutrient deficiencies - antioxidants, B vitamins, minerals, amino acids, and lipids
• Adrenal insuffiency
• Hypothyroidism
• Mold mycotoxins
• Heavy metal toxicity
• Spinal issues - CCI/Chiari, tethered cord, etc.

Best wishes...

 

[bensmith]

I think thats true about time martin. Thanks for the list, lotta stuff here.

I agree, time is something different with this disease.

I wonder if we will finally see some help within the next year or two.

I guess abilify is like that, but lime op, you martin, and me, it def doesn’t help everybody sady.

I really hope we see some sort of life raft very soon, but i wonder if its still not 2 to 3, or maybe even 5 years away.

Sorry i’m ranbling having a hard day and really do want to hope for something soon.

 

[wabi-sabi]

I just saw something really interesting and hopeful on David Tuller's twitter. It's poster by Michael can Elzakker from the most recent conference. It shows how cognitive problems can be measured with EEG. It looks hopeful for diagnosing us. Also they might be able to use it before and after exercise to show just how bad for us exercise is! Like objective evidence of brain damage! Yippee!

I have no idea how to post a twitter thing here, so just go take a look at David Tuller's account.

 

[MonkeyMan]

I really hope we see some sort of life raft very soon, but i wonder if its still not 2 to 3, or maybe even 5 years away.

I had to chuckle when I read this. With all due respect, "treatment 3-5 years away" has been the cliché prediction for this disease ever since ME/CFS was first identified decades ago. 3-5 years is an appealing time-frame because it doesn't sound like "decades" yet it gives plenty of time for stuff to happen.

And yet, the "3-5 year" time-frame never comes true; it just constantly slips into the future.

 

[bensmith]

I had to chuckle when I read this. With all due respect, "treatment 3-5 years away" has been the cliché prediction for this disease ever since ME/CFS was first identified decades ago. 3-5 years is an appealing time-frame because it doesn't sound like "decades" yet it gives plenty of time for stuff to happen.

And yet, the "3-5 year" time-frame never comes true; it just constantly slips into the future.

Yeah but if i don’t keep up the facade i’ll prob kill myself.

 

[Boba]

Yeah but if i don’t keep up the facade i’ll prob kill myself.

This.

 

[The Bard]

Martin, if we pull our resources, we could perhaps make a compelling “fair use” argument under Section 107 of the Copyright Act, thus permitting the sharing of Younger’s documents. Unlikely though as a transformative use would be difficult to achieve.

I miss our profession, as I’m sure you do Martin.