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

[Ryan31337]

A new interesting snippet:

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...

 

[Andy]

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...

Yep, would definitely agree with this. The sleep part really good, the personality stuff from the 1920s not so much.

 

[Ryan31337]

If you found the sleep study presentation interesting you might also enjoy this:


Its focus is on sleep abnormality in POTS patients but I have no doubt there will be crossover. It is at a lower level with more data and discussion. There was also a video somewhere but I can't find it now

 

[Daisymay]

huge progress - really?

It couldn't be he said that because they've found something but they're not divulging it yet? OK, maybe just wishful thinking on my part!

 

[John Mac]

An email sent out from the Open Medicine Foundation by Ron Davis

A Glimpse into My London Talk

Dear John,

I prepared this statement for Ashley Haugen to read yesterday at the Western Massachusetts Department of Public Health screening of Unrest. This is new information from the Severely ill Patient Study (SIPS) that I also presented in London:
We have made considerable progress in analyzing the data from the severely ill patient study. This has taken some time because we have only had one bioinformatic scientist analyzing the massive amount of data.

We have found that there are a considerable number of mutations that are more common in ME/CFS patients than in healthy controls. This would suggest that these mutations make a patient more susceptible to having ME/CFS. It could also indicate that some of the mutations are responsible for the severity of the patients we studied. We also see a large number of metabolomic changes that have been previously seen in less severe patients. These metabolomic differences between healthy controls and our severely ill patients are often much bigger than in studies with less severe patients. A more detailed analysis of this data may aid us in developing treatments.

One area we are currently studying using the genetic and metabolomic data is the possibility there may be one or more metabolic traps. This is a metabolic state that a patient can develop, possibly caused by physical stress such as infection. Once a patient is in this state they cannot easily get out by rest.

We are conducting system biology and pathway analysis that shows that a metabolic trap is possible, and that some of the observed mutations make it more likely. If this is the case we should be able to push the patients out of this state by a specific metabolic intervention. We are very hopeful that this could be a one time treatment, take only a few days, and be relative inexpensive.

Sending greetings from London,

Ronald W. Davis, PhD
Director, OMF ME/CFS Scientific Advisory Board
Director, Stanford Genome Technology Center

 

[NelliePledge]

It couldn't be he said that because they've found something but they're not divulging it yet? OK, maybe just wishful thinking on my part!

My cynical head thinks the huge progress may be in his mindset towards the illness that now he’s finding stuff himself it is truly sinking in that we really are not just tired.

 

[NelliePledge]

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...

I hope some other scientists there said mate your sleep stuff is good but where the hell did you get the personality crap from. I wonder if he was listening to any of the other presenters maybe he was enlightened- you can only hope.

 

[Sasha]

More from Emma and others in the past few hours (don't forget to click 'latest'):

https://twitter.com/hashtag/iimec13?f=tweets&vertical=default&src=hash

 

[Sasha]

I wish I was good enough at Twitter to post the threads that Emma Joy has produced for (I think) each talk. They're great!

 

[Sasha]

Interesting snippet from Emma about Maureen Hanson's work (part of the whole Twitter thread about it):

 

[Trish]

Ron Davis writes: ''...If this is the case we should be able to push the patients out of this state by a specific metabolic intervention. We are very hopeful that this could be a one time treatment, take only a few days, and be relative inexpensive.

I have mixed feelings about statements like this. I know he likes to give us hope, and I certainly hope it pans out into something tangible, but I worry that it will raise some readers' expectations unrealistically. We cling on to hope, but the downside comes when, as with Rituximab, it doesn't work out after all. For the sake of my sanity, I have to tell myself not to get excited by statements like this.

 

[alex3619]

I have mixed feelings about statements like this. I know he likes to give us hope, and I certainly hope it pans out into something tangible, but I worry that it will raise some readers' expectations unrealistically. We cling on to hope, but the downside comes when, as with Rituximab, it doesn't work out after all. For the sake of my sanity, I have to tell myself not to get excited by statements like this.

To me this is a conditional hope. IF, and only if, the problem is a metabolic trap like the four under investigation, then it might be quick, easy, and cheap to fix. If its something else this kind of treatment will not apply.

 

[Ryan31337]

I came away with more the opposite feeling, that it is a gargantuan task and we're still at the starting line.

Something that always confused me was the lack of other disease group inclusion when testing his biomarker diagnostic inventions, how are we to know if they're specific for ME/CFS? But Ron made it very clear in this talk that we're literally only concerned about sensitivity at this point, proving patients are ill, specificity will come later.

 

[Jaybee00]

Still no word on the Noweigan cyclo study presented in the closed session?

Thanks

 

[Ryan31337]

Baraniuk's talk was entertaining and thorough, though not particularly remarkable. I thought it illustrated quite clearly the failure of the NIH approach in only granting funds to those presenting hypotheses, because to me it appeared like 5 or 6 random statements he threw against the wall in order to see what sticks. Questions like is CFS just depression seemed a bit redundant but I guess you have to start somewhere...

One interesting discovery was that he found a sub-group that had exercise induced postural tachycardia. They did not have POTS before an exercise test, but they did transiently afterwards. He was quite perplexed by this and hoped that someone would be able to prove him wrong. From an anecdotal point of view this was of no surprise to me, as my autonomic function always bombs after exertion & during PEM (I have CFS/ME & POTS).

He also got a couple of sly jabs in at Wessely, which went down well

 

[Sasha]

One interesting discovery was that he found a sub-group that had exercise induced postural tachycardia. They did not have POTS before an exercise test, but they did transiently afterwards. He was quite perplexed by this and hoped that someone would be able to prove him wrong. From an anecdotal point of view this was of no surprise to me, as my autonomic function always bombs after exertion & during PEM (I have CFS/ME & POTS).

I remember Nancy Klimas saying some years back that when PWME exert themselves, the ANS tanks and then takes the immune system with it. Perhaps someone could point Baranuik in her direction. I don't know that she ever published anything on that.

 

[Andy]

Still no word on the Noweigan cyclo study presented in the closed session?

Thanks

Memory starting to get hazy now so details are going to be lacking. One of the Scandinavian researchers (NOT Fluge or Mella), in talking about his topic, happened to mention that a patient he was treating had been a subject of the cyclo study, that she experienced temporary partial relief of her symptoms but that she then had relapsed. Apologies to who ever gave that presentation as that little nugget of information stuck with more than the rest of what was said.

 

[andypants]

Memory starting to get hazy now so details are going to be lacking. One of the Scandinavian researchers (NOT Fluge or Mella), in talking about his topic, happened to mention that a patient he was treating had been a subject of the cyclo study, that she experienced temporary partial relief of her symptoms but that she then had relapsed. Apologies to who ever gave that presentation as that little nugget of information stuck with more than the rest of what was said.

Judging by Emma’s tweets, this was Kristian Sommerfelt, the pediatric neurologist. This was a case study on a 56 year old female who had a complete remission of all symptoms after a single dose of cyclo, which lasted for two months before the symptoms came back.

(Edited for autocorrect)

 

[Sunshine3]

I remember Nancy Klimas saying some years back that when PWME exert themselves, the ANS tanks and then takes the immune system with it. Perhaps someone could point Baranuik in her direction. I don't know that she ever published anything on that.

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.

 

[alex3619]

Her pilot trial is due to start this year....but if it's successful, where will she get funding to proceed is a problem.

The point is a successful pilot trial is the best reason for new funds to be granted.