Who are currently the best ME/CFS researchers?

[duncan]

I find it very hard to see who is doing the best because its really all going so incredibly slowly and I just find so much of it disappointing. There have been critical flaws in every study, almost always around patient selection bias and and definition of disease etc etc

Plenty of precedents over the last half century, many of which are contemporaries of ME/CFS. Politics.

The lack of real involvement of patient representatives is really showing in a lot of these studies and where they are included its really obvious when the patient representative has been overruled.

Political fingerprints once again, but somehow inadmissible.

 

[Creekside]

Bottom line, even if I were to continue playing the guinea pig, the odds of my stumbling across a cure are pretty slim

Slim is better than zero. I did stumble across a cure for my PEM. I certainly wouldn't have expected a common spice to 100% block PEM and then cure it, but it did. I've stumbled across other treatments that worked for specific problems. I haven't bothered to try prescription drugs for years, but I still occasionally try a new foodstuff, simply because I don't 100% know that it won't help.

Because even when they do believe you, do care, and actually are up to date on the latest literature, their hands are essentially tied.

That's the case with my present GP. He accepts my claim to having ME, but admits he can't do anything about it. He may write an experimental prescription for me, because I so rarely do so (showing I'm not a drug-chaser). I don't expect to find a better doctor than that regarding ME.

 

[Creekside]

But we all have to go through that stage, and it's not possible to hurry it. All the old hands can do is reassure people that it is possible to reach the point where you can get off the hamster wheel of endlessly searching for things that will bolster your hope, and too often coming back empty-handed and exhausted.

So true. The length of time it takes to reach that stage depends on the individual. I'm not sure now how long it took me: 10-15 years? However long it took, I'm now okay with not searching for the next doctor or drug that will somehow make the nightmare end. I haven't lost hope of finding treatments for some problems, but I don't get stressed about it either.

Peace is good. I have bunnies (snowshoe hares) on my lawn; I watched a mink playing around; I listen to owls having hoo-hooing contests. Peaceful, and all that biodiversity convinces me I'm at least in a healthy environment.

 

[MinIreland]

Slim is better than zero. I did stumble across a cure for my PEM. I certainly wouldn't have expected a common spice to 100% block PEM and then cure it, but it did. I've stumbled across other treatments that worked for specific problems. I haven't bothered to try prescription drugs for years, but I still occasionally try a new foodstuff, simply because I don't 100% know that it won't help.


That's the case with my present GP. He accepts my claim to having ME, but admits he can't do anything about it. He may write an experimental prescription for me, because I so rarely do so (showing I'm not a drug-chaser). I don't expect to find a better doctor than that regarding ME.

What is the spice you are referring to, @Creekside and how does it help you? I remember someone mentioning cumin, but I don't remember if it was you...

 

[Creekside]

What is the spice you are referring to

Yes, cuminum cyminum. I've had a few people report minor benefits from it, but none the dramatic effects it had on my PEM. I'm still hoping it will work well for someone else. Cuminaldehyde isn't a well-researched chemical, so I have no idea what mechanism is involved in its blocking of PEM.

I'm also hoping that someone in the world will stumble across a similar treatment for ME, which works for more than just one individual. It's not impossible.

 

[syedME]

@Braganca, I saw Dr Rizwan today and he said exactly what you said. He prescribed CoQ10 and LDN. Results wise, he didn't claim exactly how you worded it. He said that IF the medication is helpful, then about 70% of his patients improves. I'll try the meds cautiously.

I invited him to this forum, I brought him the Welcome sheet. He said he didn't know if he'd have the time, to which I kindly said that I understand that, but that after all, he needs to stay on top of things to help his patients. Of course, he agreed .

Hey.Did he recommend any nutritional therapist ?I was reading a blog about an prominent ME advocate who said consultation with nutritional therapist helped her regain her energy level.Unfortunately I don't have means to reach out to her other than online .But I am neither being finding any CFS/ME aware nutritional therapist online whom I can take appointment.Does anyone has any recommendation ?

Regards

 

[MinIreland]

Hey.Did he recommend any nutritional therapist ?I was reading a blog about an prominent ME advocate who said consultation with nutritional therapist helped her regain her energy level.Unfortunately I don't have means to reach out to her other than online .But I am neither being finding any CFS/ME aware nutritional therapist online whom I can take appointment.Does anyone has any recommendation ?

Regards

He didn't mention a nutritional therapist. He asked about my alcohol intake, that's all.