13th Invest in ME Research International ME Conference - 1st June 2018

Sorry, @NelliePledge, I don't recall if he discussed the lymphatic system.

He certainly felt that poor sleep, evidenced by parasympathetic withdrawal, was contributing to overall problems though. I assume this is the publication that he was basing the talk on: https://www.researchgate.net/public...c_Fatigue_Syndrome_Compared_to_Tired_Controls

 

I was sitting down having my lunch and Ingrid Rekeland walked by, so i jumped up and stopped her in her tracks and pestered her until she divulged some information.

She said they are a lot more cautious now after the ritux trial, but she still thinks it possible that cyclo was the main drug which led to a response in the cancer patients. It could be that they were led down the wrong path by a ritux responder.

She said about 7 people have contacted them independently of any trial just to tell them that they experienced relief from ME after cyclo treatment (for cancer)

Also, she confirmed they are investigating how to perform a blinded trial but that it's not easy.
She expects the cyclo results from the completed trial to be be published this year and while she wouldn't tell me any results she said the fact they are continuing to look at another trail is a good indicator.

Then she told me to eat my dinner and walked away.

 

Do you have a quick link handy where I could read more? If not I'm sure I'll find it sometime .

 

I had read somewhere that it was the cyclo and not the ritux that helped in the first place, and I remembered thinking it weird that they were going after the wrong drug.

 

https://www.google.ie/url?sa=t&sour...0QwqsBCCQwAA&usg=AOvVaw1-VQ_8zP_FdkkqPDKGRHuO

 

Thank you to the tweeters and posters reporting on the conference.

It would be interesting to know how many people Nath found to not actually have ME/CFS and what diagnosis they were alternatively given. Reading the tweets answered my question from earlier, at the current pace the NIH study is expected to be ending in 2022.

 

Unger said the updated CDC Information for Healthcare Providers will be available "in June". Previously, we only knew it would be sometime this summer.

 

I spoke to Nath and Wallit about the slow pace of the study and they said the reason was that they couldn't get enough patients and that a lot of them turn out to not have ME.
They didn't give a figure though, nor did they elaborate.
It did strike me as very odd and made me wonder how all the other studies seem to get enough patients. And if so many of the NIH patients turn out to not have ME, is there a similar proportion of these patients in all the other studies?
That is worrying.

 

If that's the reason for the hold-up, we need to look at ways of working with them to re-promote the study and to pull in more punters.

 

Yes i did ask them about this and they said they were working with charities and organisations.
They also said anyone in the world can apply to take part.

 

But patients would have to attend the research hospital in Bethesda, presumably? Any patient sick enough to be interested would be unlikely to survive the trip.

 

Sounds weird, PwME are usually very eager to participate if they can (is my impression). What criteria do they use? And could it be that many have comorbidities, rather than not having ME? What is it they look for that no other doctors or researchers have been able to uncover?

 

Yes, that is one concern I had. There is also the possiblity that they are sparsing out people with ME/CFS due to comorbid conditions or other rigorious criteria. That's fine to be very picky, probably necessary at this point. But I also find it strange, because, there are not too many things that look exactly like post-infectious ME/CFS, if they were getting that many misdiagnosis in the intramural study, that would be pretty interesting news to me.

Like, if they find POTS antibodies, do they reject the patient? Or is it fully another disease? They are very different things from our current point of view.

I remember when Nath was announced I read a story about a pwme who went to see Nath and he told that person they had something else, a neurological disease, and that person never could confirm that new diagnosis. I can't remember where I read that for the life of my but I'm fairly certain that's what I read. It's also I know that Wallitt is involved, when I hear these problems I am worried about his selection bias. I have read his words.

 

Right. I wasn't aware the criteria were that strict! And they stills end a big portion away because of new diagnosis?

 

Thank you @BurnA

Sounds like cyclo is still a possibility....
It would be nice to know if the "relief" experienced was temporary (like 1 or 2 months as @andypants reported) or longer. If it's only a short term response, then cyclo may not be great option. If it needs to re-administered several times a year, then the cancer risk increases.....

 

We already know there is a high misdiagnosis rate, largely due to under-investigated patients. Some estimates put the misdiagnosis rate at three in four.

 

I think I recall a discussion of rationale in which they are hoping that repeated treatments might last longer. Anyone remember the exact quote? This depends a lot on the long term results, which are not going to come before a large number of patients have been treated and a lot of time has passed.