Recommendations disappear from CFSAC website

[Andrew]

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.

 

[Denise]

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Some of the CFSAC pages have been archived.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]

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]

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]

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]

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]

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.