P2P workshop Dec. 9 & 10, 2014

[GalaxiiGrl]

I do wish Dr. Green would stop trying to make jokes and be funny.

 

[Nielk]

Klimas

Disclosure - I am broke (?)

This is not an early IOM report says Klimas.

 

[Hope123]

I do wish Dr. Green would stop trying to make jokes and be funny.

Yeah, I don't like her as a moderator. I feel she was dismissive to presenters. I hope she or her handlers read this comment. You can keep people on time and the discussion on point without being rude.

 

[Esther12]

Yeah, I don't like her as a moderator. I feel she was dismissive to presenters. I hope she or her handlers read this comment. You can keep people on time and the discussion on point without being rude.

There has been a lot of technical problems though, and that can mean people go a bit jokey/casual in response. I thought she seemed okay.

 

[Nielk]

Mecfs are different in gene expression to GWI even though they present almost identically.

 

[Nielk]

Mecfs down regulates metabolism. GWI up regulates it in response to exercise.

 

[Nielk]

Nk cell function is best bio marker we have to date. (17papers)

It correlates with immune dysfunction.

 

[Hope123]

There has been a lot of technical problems though, and that can mean people go a bit jokey/casual in response. I thought she seemed okay.

If technical problems were an uncommon problem in ME/CFS government meetings, I can understand that but EVERY TIME there has been technical problems, esp. when it comes to accommodating online vewiers/ commenters and telephone commenters.

There are also ALMOST ALWAYS non-technical factors that make public commenting difficult. E.g. the feedback form this time requires name, phone number, e-mail when this is a stigmatizing illness where people may not want to submit this info. And for this last CFSAC, commenters were only given a week to submit comments, less than other meetings.

I have been through this for years with ME/CFS meetings so it really starts to grate on one. In additional, I have little technical expertise but have run/ participated in online discussions/ presentations that took place among multiple countries using free/ low-cost software with hardly a hitch.

 

[Hope123]

If technical problems were an uncommon problem in ME/CFS government meetings, I can understand that but EVERY TIME there has been technical problems, esp. when it comes to accommodating online vewiers/ commenters and telephone commenters.

There are also ALMOST ALWAYS non-technical factors that make public commenting difficult. E.g. the feedback form this time requires name, phone number, e-mail when this is a stigmatizing illness where people may not want to submit this info. And for this last CFSAC, commenters were only given a week to submit comments, less than other meetings.

I have been through this for years with ME/CFS meetings so it really starts to grate on one. In additional, I have little technical expertise but have run/ participated in online discussions/ presentations that took place among multiple countries using free/ low-cost software with hardly a hitch.

I should also mention that patient advocates have worked persistently for years to try to correct some of these issues.

 

[Nielk]

My cognitive problems have high jacked my brain so I have to take a break.

In my opinion all this is useless because they did not tackle distinguishing ME from CFS.

 

[Sasha]

My cognitive problems have high jacked my brain so I have to take a break.

Thanks for all your work in summarising, Nielk - both today and yesterday.

 

[Hope123]

Thanks for all your work in summarising, Nielk - both today and yesterday.

Yes, thanks Nielk. It's hard to follow and type at the same time!

 

[Esther12]

Ta NielK

Vernon:

"The outcomes patients indicate are clinically meaningful are similar to what is measured in the literature [with some missing]"

Hmmm.

 

[Esther12]

Some interesting stuff about how they can analyse language in a standardised manner. No idea how useful it is.

 

[Sasha]

I found it odd that menopause was considered a comorbid condition. It's like saying 'being female and over 50 is a comorbid condition'.

 

[Esther12]

Lots of patients say 'pain' and 'fatigue' are important... but this can mean so many things to different people I'm not sure how useful that is.

 

[user9876]

Some interesting stuff about how they can analyse language in a standardised manner. No idea how useful it is.

I would be concerned without seeing the details. There are issues with quality and particularly with how people fail to use grammar. What worries me is they aren't talking about how they validated the techniques. I wonder how a very simple word wall technique would work at picking out things that people talk about.

Also it would be interesting to know what cluster analysis they use. As in how many differences between the different patients are allowed and how do they choose the cluster centers.

 

[Esther12]

They looked at 12000 CFS abstracts, and assessed symptom words and clusters there,... compared it to words patients used.

TBH, I'm not sure how useful this research could be given the limits of language, and the way that the language patients use is shaped by researchers and doctors.

 

[Esther12]

There are issues with quality and particularly with how people fail to use grammar.

She did mention that as a limitation.

I don't know anything about this sort of technique, so thought it was interesting, but am concerned about possible problems.

 

[GalaxiiGrl]

It ended with Paris Watson announcing that the preliminary report will be published on the NIH website on Thursday, Dec. 18th. They will accept comments on it for 30 days. The final report will be published some time in February.