• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

MEA gives guarded welcome to US Pathways to Prevention Report

charles shepherd

Senior Member
Messages
2,239
An important report was published in the USA just before Christmas that was designed to a) identify research gaps in ME/CFS, b) identify methodological and scientific weaknesses, c) suggest research needs, and d) move the field forward through an unbiased, evidence-based assessment of a complex public health issue.


The report was published as part of the Pathways to Prevention programme of the National Institutes of Health (NIH), and was produced by a panel of independent academics – none of whom had ‘history’ in ME/CFS. What they came up with could have worldwide repercussions for the way ME/CFS is researched in the future.

Here, DR CHARLES SHEPHERD, medical adviser to The ME Association, summarises the key findings of the draft executive summary and considers where we might go from here.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Thanks, @charles shepherd. A lot of us are working on responses to P2P (I took a break from writing mine to look at your thread!).

Does the MEA plan to submit its comments to the NIH? I really hope it will! We all need to be making that point about money.
 

charles shepherd

Senior Member
Messages
2,239
Thanks, @charles shepherd. A lot of us are working on responses to P2P (I took a break from writing mine to look at your thread!).

Does the MEA plan to submit its comments to the NIH? I really hope it will! We all need to be making that point about money.

Reply

Yes, we will be sending in a modified version of this, and adding some meat to the bone where necessary, as a response

Can you remind us of the date by which submissions have to be made?

C
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Reply

Yes, we will be sending in a modified version of this, and adding some meat to the bone where necessary, as a response

Can you remind us of the date by which submissions have to be made?

C

Excellent!

Deadline for response: 16 January.

The NIH response instructions are to "please reference the corresponding line number of the report", and submit your comments via prevention@mail.nih.gov or postal mail to:

Office of Disease Prevention
National Institutes of Health
ATTN: Paris A. Watson
6100 Executive Boulevard, Suite 2B03
Bethesda, MD 20892
 

charles shepherd

Senior Member
Messages
2,239
Excellent!

Deadline for response: 16 January.

The NIH response instructions are to "please reference the corresponding line number of the report", and submit your comments via prevention@mail.nih.gov or postal mail to:

Office of Disease Prevention
National Institutes of Health
ATTN: Paris A. Watson
6100 Executive Boulevard, Suite 2B03
Bethesda, MD 20892

Thanks Sasha - this is the website link if anyone requires more details on the submission of comments to NIH:

https://prevention.nih.gov/programs-events/pathways-to-prevention/workshops/me-cfs/public-comments