Third Annual Community Symposium on the Molecular Basis of ME/CFS Sponsored by OMF - DISCUSSION

JES

JES

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Benzos will definitely cause a dependency and tolerance will develop, where your body will be unable to cope with a reduced dosage without tapering off slowly. I guess some people can develop addiction to them, but for me they didn't provide any "high". I think in psychiatry benzos have got an exaggerated bad reputation, which is a bit bizarre when considering what other psychiatric drugs are being prescribed to people, which have equally or more bothersome aspects.

If ativan works for some aspect of ME/CFS, I think it would be by far the most accessible, cost-efficient and probably safest treatment when compared with other potentially efficient, experimental, immuno-modulating drugs like copaxone or rituximab. I'd definitely like to know if ativan shows a response in the nanoneedle.
 
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Mary

Mary

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nandixon said:
GABA doesn't generally cross the blood brain barrier and so doesn't seem too likely to help for sleep when taken orally.
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]I've read this too, although I've also read that we have GABA receptors in our gut, so taking plain GABA may be helpful. I've also read that l-theanine DOES cross the blood-brain barrier, and will help our brains produce GABA. So I take l-theanine in addition to a cocktail of other supplements for sleep.
 
SlamDancin

SlamDancin

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@JES Benzos are absolutely no joke and just because you didn’t get high from them doesn’t mean psychs aren’t being properly careful prescribing them. You don’t want to know what a benzo withdrawal feels like I promise. In fact one paper I’ve read and referenced here before is a medical hypothesis that benzo withdrawal could be a precipitating factor in unexplained chronic illnesses involving NO/ONOO- viscious cycles such as ME/CFS, to quote the paper.
 
F

FMMM1

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raghav said:
I was eagerly waiting to watch the presentation of Jarred Younger but it did not happen. Why ? Is it that the sponsor wants to publish it in a journal or did the researech not happen as expected ? Why was his name on the list of speakers and then it did not happen ? This year's talks were more about the technology side and less of hardcore medical presentations. So I am disappointed. If funding is the issue for OMF then why have 70 + researchers on the panel ?
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Jarred is due to present at a Conference on 16th and 17th so possibly these may be the presentation he was due to give at the Community Symposium:
https://www.s4me.info/threads/sweden-me-conferences-oct-16th-17th.11660/#post-207022

Don't know if they will be available later or just live.
 
R

raghav

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Jarred Younger towards the end specifically mentions curcumin and stinging nettle. There was no mention of D-Naltrexone. He said they were half way through the trial using TSPO ligand for the PET scan using the superior version of the ligand compared to the Japanese trials. But he did not let out any info on the trials. But the title of his talk "The Brain on Fire" is an indicator that it is the brain which is causing the ME. But he also says what is triggering it could be anything from gut bacteria(LPS) to right upto diesel fumes. He said there is a marked increase in Leptin, CRP in the blood of ME patients and the MR spectroscopy of the whole brain shows elevated levels of lactate (forgot the other two ). He has a lot of projects and wants post doctoral researchers good in Neuro imaging for the trials. He has funding from NIH and DoD and some more federal institutions as he shows in the first slide.

This is all I could recollect with my morning brain fog. Do watch the presentation.It is for 30 minutes. I hope they provide corrected video of the presentation and also translated versions of Jonas Berquist and other speakers presentations.
 
bertiedog

bertiedog

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perrier said:
Thanks for raising this. In fact, many CFS/ME doctors routinely prescribe Klonopin, for sleep and to tamp down the nervous system. Yet, it looks like Ativan is more beneficial. Both are highly addictive
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Just FYI I have taken just 1/4 of a 0.5 mg strength of clonazapan if I cannot sleep from around 2000 but I have never raised the dose cos I haven't needed to. I rarely take it on consecutive nights because I take 25 mg Lyrica and 1/2 mg melatonin most nights on going to bed and the majority of time these work and I can get to sleep and stay asleep. However for whatever reasons some nights they don't work at all so I have to follow up with the clonazapan.

I can honestly say that for nearly 20 years this drug has stopped me from loosing my mind when my CNS goes into overdrive and sends me into a state of almost panic. In fact in the past I have had panic attacks at night which were horrendous but thankfully these days it doesn't get to that degree and thankfully those attacks only ever happened at night.

In my case its probably something to do with the fact my body doesn't make cortisol anymore and I am steroid dependent. If I am too low in it I can feel quite anxious because of the dizziness that can come along with the low cortisol. I am better at recognising this and take some hydrocortisone plus the clonazapan and usually will be able to go to sleep after about an hour as my CNS calms down. In the past I have had some nights when I couldn't sleep at all and my nervous system would make me feel like a complete wreck because of the huge amount of adrenaline I would experience.

Therefore I am not at all surprised that a benzodiazepine has tested favourably but my worry would be that if one was to start taking it daily then one would become hooked because I find that just the 1/4 tablet I take gives me such a lovely relaxed feeling it would be wonderful to have that feeling every day! Unfortunately I have learned that if something sounds too good to be true it probably is.

Pam
 
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