Advocacy Effort Please respond to NIH Request for Information by 24 June

Merry

Well-Known Member
The National Institutes of Health has issued a Request for Information titled "Soliciting Input for New Research Strategies for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ME/CFS." This is the email address: MECFSRFI@mail.nih.gov . The deadline is the 24th of June.
As far as I know, people from outside the US can participate.

Even if you are only able to write a few sentences, please take this opportunity to let the NIH know that ME/CFS research is important to you. Perhaps you could name the one area of research you think is vital to making progress in understanding the disease.

Read the complete RFI here: https://grants.nih.gov/grants/guide/notice-files/NOT-NS-16-024.html

Two ME/CFS bloggers have posted their detailed responses to the RFI. Their responses are very different. Read them to get ideas on what you might write.

Check out Jennie Spotila's response: http://www.occupycfs.com/

And here is Sue Jackson's: http://livewithcfs.blogspot.com/2016/06/unique-opportunity-to-provide-input-to.html

Jennie also suggests looking at the the P2P Action Items for inspirtation. She provides a link to the pdf in her post.

A discussion of the RFI has also been taking place on this Health Rising thread: http://www.healthrising.org/forums/threads/nih-request-for-information-soliciting-input-for-new-research-strategies-for-myalgic-encephalomyeli.4451/
 

Merry

Well-Known Member
This is what I wrote:

Dear Working Group Members:

I am a 64 year old ME/CFS patient who has been ill for 48 years. My mother, although never officially diagnosed with ME/CFS, was also ill, possibly as early as her teens in the 1940s. I am sorry to say that I am not well enough, or knowledgeable enough, to respond in as much detail as you request, but I will attempt to make a few points.

Pediatric research should be a priority.

But please address also the needs of geriatric ME/CFS patients. If participation on online patient forums is any indication, the elderly and near-elderly population of patients is large. Many of these people have been ill for decades. Is the disease progressive? What palliative care and social support can be offered to them?

Longitudinal studies would be good.

Why in some households are multiple people ill, usually blood relatives but sometimes unrelated members?

ME/CFS patients who are parents have often reported on patient forums that they have autistic children. Also some ME/CFS patients report having grown up with autistic parents (my own father I believe had Asperger's). Research the connection between ME/CFS and autism.

The narrative of this illness has almost entirely been told by affluent, well-educated white patients. More research needs to be done to identify the incidence of illness among the poor and minorities and to address how to help them.

I understand, of course, that basic work such as agreement on a research diagnostic definition and identifying a biomarker or biomarkers has yet to be done and that the federal government must allocate much more money for research, a fair amount, enough to catch up, reparations.

Thank you for offering this opportunity to speak. Thank you for the work you do.
 

Lissa

Well-Known Member
This is what I wrote:

Dear Working Group Members:

I am a 64 year old ME/CFS patient who has been ill for 48 years. My mother, although never officially diagnosed with ME/CFS, was also ill, possibly as early as her teens in the 1940s. I am sorry to say that I am not well enough, or knowledgeable enough, to respond in as much detail as you request, but I will attempt to make a few points.

Pediatric research should be a priority.

But please address also the needs of geriatric ME/CFS patients. If participation on online patient forums is any indication, the elderly and near-elderly population of patients is large. Many of these people have been ill for decades. Is the disease progressive? What palliative care and social support can be offered to them?

Longitudinal studies would be good.

Why in some households are multiple people ill, usually blood relatives but sometimes unrelated members?

ME/CFS patients who are parents have often reported on patient forums that they have autistic children. Also some ME/CFS patients report having grown up with autistic parents (my own father I believe had Asperger's). Research the connection between ME/CFS and autism.

The narrative of this illness has almost entirely been told by affluent, well-educated white patients. More research needs to be done to identify the incidence of illness among the poor and minorities and to address how to help them.

I understand, of course, that basic work such as agreement on a research diagnostic definition and identifying a biomarker or biomarkers has yet to be done and that the federal government must allocate much more money for research, a fair amount, enough to catch up, reparations.

Thank you for offering this opportunity to speak. Thank you for the work you do.
All excellent points!! Thanks for sharing @Merry !
 

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