P2P workshop Dec. 9 & 10, 2014

[Nielk]

High comorbidity of CFS and fibromyalgia. Could treatments of fibromyalgia help with CFS?

 

[Nielk]

Clinical comorbidity.

Cancer and depression. Patients with both will not fare as well as patients with cancer alone.

 

[Nielk]

Study on impact of CFS with or without fibromyalgia. The ones with both were more severely affected. ( really surprising!)

 

[GalaxiiGrl]

I don't understand how comorbidity studies can be helpful here when they haven't yet satisfactorily defined the main illness of ME/CFS. First get the definition sorted out (ideally adopt the CCC), do some quality studies on ME/CFS using that definition, and maybe EVENTUALLY comorbidity research will make sense.

 

[Esther12]

Can't do the same things you could before you were ill, now that a psychobabbler has declared you are recovered? It's all down to aging!

Anyone got any more specifics on that argument?

Thanks for the comments.

 

[Wally]

Niloofar Afari - "I may have not done a very comprehensive review of the literature"

 

[Nielk]

Familial comorbidity.

When one has a condition another might be found in another member of the family. Twin studies her again!

Multiple conditions show up in families.

 

[Nielk]

Genetic factor between CFS, pain, INS, depression, anxiety disorders.

 

[Nielk]

She is also Amber of the MAPP research. I guess the last three speakers are all connected.

 

[Nielk]

She is promotingAPP style research.

I guess this afternoon is a promotion for this type of research.

 

[Nielk]

The panel members have NO QUESTIONS!!!

 

[Nielk]

The audience sure does. This members has a lot of anger that all they are talking about is fatigue!!!

 

[Nielk]

Very angry that PEM and neuro cognitive problems have not been focused on.

 

[daisybell]

I'm not listening in but have scanned the evidence review briefly, and am generally pleasantly surprised. Glad to see Rituximab mentioned several times, and the flaws of PACE included....

 

[Nielk]

Jennie Spotila.
So many important aspects have not been discussed at all

NIH said no for big data research for mecfs and said no to a MAPP form research and said no to a RFA for mecfs.

 

[Wally]

Niloofar Afari

"Future Directions"
- MAPP style collaborations
- Comorbidity research to better understand mechanisms and risk
- Prospective observational studies to understand natural history with and without comorbidities
- Clinical trials specifically designed to address cormorbid conditions
- Twin and genetic studies to identify potential treatment segments

 

[GalaxiiGrl]

Notice the speakers' responses to Jennie Spotila didn't address her comments saying that the NIH has been denying CFSAC's recommendations to fund this type of research for years.

 

[dancer]

Go Nancy! Nancy Klimas is doing a good job challenging the "there are no biomarkers" misinformation

 

[Hope123]

I'm not listening in but have scanned the evidence review briefly, and am generally pleasantly surprised. Glad to see Rituximab mentioned several times, and the flaws of PACE included....

I have not scanned the FINAL report yet but I can tell you that there was a LOT of action behind the scenes from patients, clinicians, advocates, and researchers to assure that Rituximab was mentioned as well as the flaws of PACE. Many people sent e-mails during the AHRQ evidence review draft comment period and I hope that had some impact on the review.

If you like that Rituximab and the flaws of PACE was mentioned, tell the powers that me that you liked that part. There is one month after the NIH P2P report during which the public can comment. I don't think the link is published yet as the report is not out but look for it.

Given the poor energy levels I have, like the rest of you, one lesson I have learned over time is to voice my concerns not just with sympathetic people, like on this forum, but at the people who need to hear it.

 

[Valentijn]

Focusing on comorbidity can help with understanding with diseases.

So basically we should continue to muddle the diagnosis and research as much as possible