CDC - Collaboration to Develop ME/CFS Educational Materials Based on IOM Report

[JennyJenny]

https://www.fbo.gov/index?s=opportu...cdbed4d91a7e725afa00eab110f&tab=core&_cview=0

Solicitation Number: 2015-Q-64325
Notice Type: Combined Synopsis/Solicitation

Synopsis: Added: Aug 21, 2015 1:24 pm

The Centers for Disease Control and Prevention (CDC) has a requirement related to ME/CFS health education activities through facilitating meetings and teleconference calls for stakeholder engagement, conducting needs assessments, preparing reports for meetings and needs assessments, consultation and technical assistance, medical/scientific writing assistance and related support activities. The contractor will assist in document review and revision for CDC clearance.

It is the responsibility of prospective offerors to stay abreast of additional postings regarding this solicitation at the FedBizOpps Internet site.

 

[Cort]

https://www.fbo.gov/index?s=opportu...cdbed4d91a7e725afa00eab110f&tab=core&_cview=0

Solicitation Number: 2015-Q-64325
Notice Type: Combined Synopsis/Solicitation

Synopsis: Added: Aug 21, 2015 1:24 pm

The Centers for Disease Control and Prevention (CDC) has a requirement related to ME/CFS health education activities through facilitating meetings and teleconference calls for stakeholder engagement, conducting needs assessments, preparing reports for meetings and needs assessments, consultation and technical assistance, medical/scientific writing assistance and related support activities. The contractor will assist in document review and revision for CDC clearance.

It is the responsibility of prospective offerors to stay abreast of additional postings regarding this solicitation at the FedBizOpps Internet site.

That's interesting - I wonder why they are going outside the CDC itself to prepare educational materials.

CDC’s existing web pages2 , toolkit, and continuing education courses are highly visible and important resources on disease and its diagnosis that need to be revised to incorporate the IOM recommendations. While treatment/management recommendations were beyond the scope of the IOM report, CDC’s materials eventually need to incorporate the best evidence about these issues because diagnosis without further guidance on therapy/management is unlikely to improve the well-being of ME/CFS patients. An approach toward the development of such guidance would be a GRADE analysis or some other systematic review of the literature on CFS treatment and management. In addition, the IOM report recommends that the name of the disease be changed from ME/CFS to systemic exertion intolerance disease (SEID).

I'm a bit worried about that literature review - I hope it takes in more than studies; if not we're back at CBT/GET....

They're revising most of the website it seems. A big project that they're devoting some money to - that's good.

 

[JennyJenny]

I'm a bit worried about that literature review - I hope it takes in more than studies; if not we're back at CBT/GET....

They're revising most of the website it seems. A big project that they're devoting some money to - that's good.

My gut tells me, and of course I am only going by my gut feeling, they will not be including CBT and GET. I think they are finally realizing that the UK and Australia studies are based on bad criteria.

I think that an Open Letter to the head of the CDC focused on CBT and GET and why it should not be included in the new materials would be a good idea. Advocates need to go on record that they attempted to shape the new materials. If CBT and GET is included that it will be a fight on our hands so it is best to work now to shape the outcome, not fight it when it goes awry.

 

[Cort]

I was thinking of doing an analysis of how much more money has been pumped into CBT/GET by European countries with very little attention given to other types of clinical trials.. The scientific literature is skewed towards CBT/GET.

 

[JennyJenny]

The scientific literature is skewed towards CBT/GET.

Yes, exactly. The Oxford definition is utilized by much of the UK (Northern Ireland has adopted CCC) and it sweeps in people with Chronic Fatigue from other illnesses and diseases such as depression, RA and even OA AND of course sweeps in depression patients. Garbage in, garbage out; the old 70's computer data programming mantra.

You should Open Letter it Cort, right to the head of the CDC and be gracious, polite, firm on facts. Make your analysis compact but include all the research within the last 2 years that blatantly shows this is biological. Refute the claims made by the psychiatrists that are heading up the UK ME psychiatric stance. I know many wrote about it as soon as GET/CBT "research" came out of the UK and Australia.

Honestly, if I had the knowledge and writing skills you do I would do it.

And sorry for putting my 2cents in so strongly but I know you can do this and do it well. I think Ryan Prior is someone that also is able to convey this disease well and in a way that carries much weight but with graciousness and kindness yet factual. Maybe teaming up with him if the two of you are able would be a good idea. Another good writer and patient advocate is Adrienne Dellwo. I think a collaboration of minds will lend credence and she is from the UK so she may be able to help in your understanding of what patients are experiencing there and why these therapies should not be utilized here.

 

[SuZeeQ]

Hi all, Just a thought. The removal of funding for CDC's ME/CFS research, could that be considered a rebuke of CDC in regards to MECFS? Only a thought based on no evidence. Probably just wishful thinking.
Cheers,