The LIFT trial (OMF) - Pyridostigmine (mestinon) and Low Dose Naltrexone (LDN)

Discussion moved from the OMF news thread.

Trial details - mestinon and/or LDN

https://www.omf.ngo/lift-trial/

 

I was ready to curse the omfs name if they were indulging in a Prustyestque overhyping but this is genuinely good news!

We've needed this sort of trial of both drugs for a long time.
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These 2 drugs IMHO will not result in much, and this is a waste of money. LDN is not tolerated by many pts due to side effects. Improvements are minimal, in those it helps. Most pts have tried and are trying LDN. I have not met a soul who has not tried LDN. This is not a solution. As for mestinon, well, American CFS/ME drs have been offering it for 20 yrs before Systrom was involved. The side effects are also not well tolerated by ME pts. The improvements are also minimal or not at all. Neither of these 2 drugs helps with Exertion Intolerance. This is Prusty type hype. Very painfully disappointed here: broken hearted actually for all the young people in hell with this illness.

 

It is great that this is being done. We need solid evidence if these drugs work, not just for treatment, but also as clues as to what is going wrong in the body. We know they aren't cures, but there's still a lot of value in definitely establishing what they do or don't do. I think this kind of incremental approach, building on what we already know and trying to confirm or reject something, is important and we have far too little of it in ME research.

I wish they were looking at Abilify rather than Mestinon (or in addition), since I think many more patients are already taking Abilify, but obviously this is Systrom's thing.

 

I agree.. this to me is a total waste of funds. The anecdotal evidence is that neither work, despite doctors loving to claim the opposite.

 

I agree. I don't know anyone who's tried it, or even how on earth you'd go about getting it prescribed. I can't see any GP agreeing to it on the basis of zero evidence, not least because they'd probably be at risk of GMC sanctions.

 

It's been common for the ME specialist clinics in Sweden to prescribe LDN. Lots of resistance from primary care, though. Jonas Bergquist, one of the researchers involved in this study, is from Sweden.

 

OK, mea culpa for assuming what is available in the USA is also available in the UK.
in the USA it is easily available. In the early 2000s it was truly widely prescribed by physicians dealing with chronic illnesses, ME and Lyme, etc. There were and are pharmacies ( I dealt with one in Forida) that are specialising in dosing LDN, making it without fillers etc, and shipping it across the USA. Most if not all of the CFS/ME doctors suggested trying it to poor suffering ME pts. So these experiments are now 2 decades old. Currently, it is also being available in Germany. Many pts report side effects and stop taking it: exacerbated flu feelings, tremors, and other side effects. Then they stop. Then they may try once again, out of desperation. I personally feel this LDN is not worth trialing, neither the time nor the money. This is an exertion intolerance illness. LDN does not address that at all. It sometimes helps with sleep. These are just my personal views after speaking to pts and having an adult daughter who has tried it several times. In fact, she was having such horrid flu feeling recently, we did not know where to turn, so she tried it again. It made the flu feeling worse; she stopped it, and it's back to status ante. Forgive me for expressing my personal views.

 

Yep. It's been on the table in the US for quite some time. I don't think it's made any noticeable dent in enough of the broad ME/CFS community to warrant any excitement at this point. It certainly did not help me. But it could be different elsewhere I suppose.

 

I have been in touch with pts in Germany, who were trying it, and also no decent results, and many side effects. If this is all that is on the table for trialing for this horrific illness, then heartbreak and tears. Best wishes.

 

After seeing the disappointed responses online, I think it's still unwise to be hyping up a simple clinical trial like this when Ron Davis is portrayed as perpetually being on the verge of a significant breakthrough with his theory/drug candidates. I watched his is ME/CFS curable talk the other day. I guess I told myself the announcement was going to be nothing so it being something a little disappointing felt more positive, if that makes sense

 

I agree with @NelliePledge that if an LDN study is done properly, a null result will be useful in stopping the prescription of an ineffective medication.

 

I guess the difference is that in socialised healthcare it's not really the patient calling the tune, and in some respects it's not even the doctor. It's true that GPs/primary care physicians have prescribed some classes of medication off-label, e.g. antidepressants, but for many meds either evidence or a strong likelihood of effectiveness is expected.

For instance, if a private practitioner is sued for enormous damages following inappropriate treatment, it's their insurer's problem—but in the NHS, it's often the taxpayer's problem. To some extent that reflects on government, which in turn reflects on the choices made in polling booths.

That's a massive oversimplification of a system I can't even pretend to understand, but you can see that in some ways it's driven by different forces. (And yes, the irony of the existence of our infamous BPS school would be hilarious if it weren't so bloody appalling!)

 

Which of course got its start in the US at the University of Rochester.

 

Unfortunately LDN made my sleep worse in the same way Elavil(amitriptyline) did 20 yrs ago. I discontinued after 2 weeks. I don't have pain but it did help some people with pain syndromes.

I got LDN through a compounding pharmacy in Canada.

 

Merged thread
The big news that OMF said they would disclose today is their LIFT trial which is a trial to see if Pyridostigmine (mestinon) and/or LDN improves some symptoms of ME/CFS. https://www.omf.ngo/lift-trial/