• 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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

Recommendations disappear from CFSAC website

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
As some of you know, the HHS has been misrepresenting the May 2013 recommendation from the CFSAC regarding a workshop for the redefinition of ME/CFS. When they did this, I was able to send a link for the real recommendation to whichever congressional representative the HHS had misled. I was wondering if/when this link would "mysteriously" disappear from the web site so I could no longer expose their lack of truthfulness. As it happens, I was writing a letter today and double checked the link. It's gone.

Here's the link: http://www.hhs.gov/advcomcfs/recommendations/cfsac-recs513.pdf.
Here the CFSAC web page that should link to it: http://www.hhs.gov/advcomcfs/meetings/index.html

Look at the entry for May 2013. The link to recommendations is a dead link (where it says PDF).

Because I expected this to happen, I downloaded a copy some time ago (see attached). But this does me little good, because I have no proof it is the real thing. In the past I could provide a link to the HHS site and people could see the truth. Now I cannot.

If you notice the link reappear, please let me now. I will compare the PDF it links to with the genuine copy I have on fie.
 

Attachments

  • cfsac-recs513.pdf
    73 KB · Views: 14

Denise

Senior Member
Messages
1,095
As some of you know, the HHS has been misrepresenting the May 2013 recommendation from the CFSAC regarding a workshop for the redefinition of ME/CFS. When they did this, I was able to send a link for the real recommendation to whichever congressional representative the HHS had misled. I was wondering if/when this link would "mysteriously" disappear from the web site so I could no longer expose their lack of truthfulness. As it happens, I was writing a letter today and double checked the link. It's gone.

Here's the link: http://www.hhs.gov/advcomcfs/recommendations/cfsac-recs513.pdf.
Here the CFSAC web page that should link to it: http://www.hhs.gov/advcomcfs/meetings/index.html

Look at the entry for May 2013. The link to recommendations is a dead link (where it says PDF).

Because I expected this to happen, I downloaded a copy some time ago (see attached). But this does me little good, because I have no proof it is the real thing. In the past I could provide a link to the HHS site and people could see the truth. Now I cannot.

If you notice the link reappear, please let me now. I will compare the PDF it links to with the genuine copy I have on fie.


Some of the CFSAC pages have been archived. The page you referenced is here:

https://wayback.archive-it.org/3919...v/advcomcfs/recommendations/cfsac-recs513.pdf
 

Denise

Senior Member
Messages
1,095
Andrew, I wonder if the recommendation you are referring to is

CFSAC Recommendations – October 3-4, 2012

CFSAC voted upon and agreed for the following recommendations be forwarded to the Assistant Secretary for Health and the Secretary:


  1. Clinical

    CFSAC recommends that you will promptly convene (by 12/31/12 or as soon as possible thereafter) at least one stakeholders’ (Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS)experts, patients, advocates) workshop in consultation with CFSAC members to reach a consensus for a case definition useful for research, diagnosis and treatment of ME/CFS beginning with the 2003 Canadian Consensus Definition for discussion purposes.

http://www.hhs.gov/advcomcfs/recommendations/10032012.html
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
Thanks, Denise. It appears to be in both. And from looking over the one from May, it appears to actually be a list of highest recommendations that reiterate earlier recommendations. Take a look in the one from May. It has earlier dates after most of the recommendations.
 

Denise

Senior Member
Messages
1,095
Thanks, Denise. It appears to be in both. And from looking over the one from May, it appears to actually be a list of highest recommendations that reiterate earlier recommendations. Take a look in the one from May. It has earlier dates after most of the recommendations.


The Highest Priority Recommendations list was voted upon at last May's meeting. As you noticed, it is a compilation of previous recommendations that CFSAC considered to be the highest priorities. When the recommendations appeared more than once, the dates of each recommendation are included.
 

medfeb

Senior Member
Messages
491
THanks, Denise
Any idea why the compiled list was archived? It's only a year old so I wouldnt think it's because it's old
 

Denise

Senior Member
Messages
1,095
THanks, Denise
Any idea why the compiled list was archived? It's only a year old so I wouldnt think it's because it's old


Like you, I was surprised that this was archived because it is less than a year old.
The archiving seems to be happening in general to bits and pieces of the CFSAC site.