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

Ryan31337 said:
I enjoyed the first half of this lecture on sleep abnormality and gylmphatic drainage.

Unfortunately he then went off on a tangent, digging up some ancient psych theories about personality types - it seemed analogous to the Type A personality stuff we've heard over and over before. According to him it goes further and makes us susceptible to all sorts of ailments.

He made it clear that ME/CFS was a serious disease but insisted this personality issue was a factor in both our recovery (positivity, a good thing) and future relapses (susceptibility, a bad thing).

Came across with good intentions but seemed like groundless leaps of logic to me. Not to mention that suggesting behaviour has any part to play is just 1-step away from blaming the patient...
Click to expand...
on the interesting stuff on sleep abnormality and glymphatic drainage was anything mentioned about a link between glymphpatic in the brain and lymphatic in the rest of the body and whether this sleep abnormality could be having an impact on physical symptoms in the body as well as on the brain?
 
Jaybee00 said:
Still no word on the Noweigan cyclo study presented in the closed session?

Thanks
Click to expand...

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.
:)
 
Sunshine3 said:
I too feel skeptical about the metabolic trap hypotheses. I know Nancy Klimas did not present at the Conference but to me, she is closer than any other researcher to cracking ME/CFS. Her idea of a system reset and her description of pem hit the nail on the head for me. Her pilot trial is due to start this year....but if it's successful, where she will get funding to proceed will probably be a big obstacle.
Click to expand...

Do you have a quick link handy where I could read more? If not I'm sure I'll find it sometime ;) .
 
BurnA said:
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.
:)
Click to expand...

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.
 
NelliePledge said:
on the interesting stuff on sleep abnormality and glymphatic drainage was anything mentioned about a link between glymphpatic in the brain and lymphatic in the rest of the body and whether this sleep abnormality could be having an impact on physical symptoms in the body as well as on the brain?
Click to expand...
i did a bit of googling and found this abstract to an article that will be available from 1 Sept 2018 https://www.ncbi.nlm.nih.gov/pubmed/28862640 Antoine Moreau et al
Understanding the functions and relationships of the glymphatic system and meningeal lymphatics which mentions links to rest of the body
 
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.
 
dreampop said:
It would be interesting to know how many people Nath found to not actually have ME/CFS and what diagnosis they were alternatively given.
Click to expand...
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.
 
BurnA said:
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.
Click to expand...

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.
 
BurnA said:
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.
Click to expand...

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?
 
BurnA said:
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.
Click to expand...

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.
 
I can see it could be difficult to get patients - the need to have been ill for less than 5 years, have a definite medically recorded infectious onset, be well enough to participate, available, able to travel, to be aware that the study exists... That probably cuts out 99% of us.
 
Trish said:
I can see it could be difficult to get patients - the need to have been ill for less than 5 years, have a definite medically recorded infectious onset, be well enough to participate, available, able to travel, to be aware that the study exists... That probably cuts out 99% of us.
Click to expand...

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.....
 
BurnA said:
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?
Click to expand...
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.
 
Jaybee00 said:
If it needs to re-administered several times a year, then the cancer risk increases.....
Click to expand...
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.
 
You must log in or register to reply here.
Back
Top Bottom