CAA celebrates “Hope on the Hill”

[Ember]

Our perspective on the federal government and why we continue our work

Importantly, the CFIDS Association serves as a non-voting liaison committee representative on the CFS Advisory Committee and works to build appropriate relationships with HHS, CDC, FDA, and the NIH to ensure that ME/CFS is high on federal agency radar. This illness is facing issues of significant under-funding and we want that problem to be addressed. While the federal government historically has a perceived lack of urgency in issues related to ME/CFS, we have seen specific evidence that ME/CFS is on the federal radar:

1. In early 2013, ME/CFS was the first disease focused on in a series of FDA-sponsored drug development workshops and it resulted in the “Voice of the Patient” report, lauded by many. In this report, FDA has determined, in writing, that Chronic Fatigue Syndrome and Myalgic Encephalomyelitis (ME/CFS) are serious conditions for which there are no approved drug treatments. It further stated, ““FDA recognizes that patients have a very unique ability to contribute to our understanding of this broader context of the disease, which is important to our role, and that of others, in the drug development process. We share the patient community’s commitment to facilitate the development of safe and effective drug therapies for this disease.”
   
   
2. CDC is conducting a study at multiple, expert ME/CFS clinical sites to better understand diagnostic and patient outcomes.
   
   
3. CDC recently used evidenced-based literature, focus group data, patient case studies, and health behavior theories to develop new CFS educational curricula aimed at medical students. Dissemination of the educational curriculum is occurring using MedEd Portal, and CDC is submitting materials to MedEd Portal for peer-review publication.
   
   
4. NIH is conducting an Evidence Based Methodology Workshop for ME/CFS to evaluate and improve research criteria.
   
   
5. CFS is one of few diseases that have a dedicated advisory committee (the CFSAC) providing advice to the executive branch. The majority of the committees advise on very broad topics; the specificity of the CFSAC gives our ME/CFS community “access and influence” on issues important to us.
   
   
6. HHS is following the recommendations of the CFSAC to reach a consensus on case definition and has charged the IOM with developing an evidence-based report on ME/CFS diagnostic criteria....

All of this tangible, specific activity – including the appointment of the IOM committee to develop clinical diagnostic criteria – indicates an important opportunity to build an emboldened base of federal support, opening the door to validation, funding and research.

More...

 

[Andrew]

If the government offered us a chance to be buried alive, the CAA would probably describe it as a wonderful opportunity to work in partnership with the government. And they would probably apply for a grant to dig the holes.

 

[JT1024]

So agree Andrew!

 

[justinreilly]

So disgusting.

These lies are what they and HHS tell our members of congress when the members ask them in response to our emails. Then the congresspersons write to us to say, everything's fine, you misunderstood, HHS is doing what CFSAC recommended.

CAA are parasites that prey on us who are too sick to defend ourselves. I have warned them repeatedly that this IoM stuff is the last straw, that if they don't do a 180 and help us, that it will we war and CAA will be destroyed after we deal with the IoM and related issues. Vernon and accomplices don't care. Their only strategy is collecting fat pay checks until CAA is bleed dry and then they will move on to fat government jobs as a reward for operating a sham astro-turf patient org.

 

[Ecoclimber]

As anyone really dissected, this spiel from the CFIDS Association? "It serves as a non-voting liaison committee representative on the CFS Advisory Committee and works to build appropriate relationships with HHS, CDC, FDA, and the NIH to ensure that ME/CFS is high on 'federal agency radar."

They then list thefollowing events that are specific evidence that ME/CFS is on the 'federal radar' as though the events listed below were the results of the CFIDS? Notice the connection...clever

1. This was done at the behest of the CAA? Could I see the written documentation for this?

2. Are we talking about the CFI in which the CAA had no say. It was result of thet generosity of the Hutchins family foundation.

3. This was done at the behest of the CAA. Could I see the written documentation for this? And this is positive?

4. This was done at the behest of the CAA. Could I see the written documentation for this? And this is positive?

5. The CFSAC has actually no broad powers to accomplish anything and over its history has accomplished very little, if any benefit on medical treatment and acceptance within the medical field. CFSAC is a venting mechanism.

6. No, this is not entirely correct considering the controversy that ensued over the contract and could ultimately end up as the IoM Death Panel for the ME/CFS patient community as it was for the Gulf War Veteran patient community as reported by CNN of 22 veteran suicides a day.
http://www.usatoday.com/story/natio...stitute-of-medicine-gulf-war-illness/2458745/

http://www.cnn.com/2013/09/21/us/22-veteran-suicides-a-day/

Finally, they inserted the Wikipedia propaganda piece for the IoM but then most patients are unaware of how money flows and influence is peddled in Washington from special interest groups, lobbyists, PAC money especially from the medical/health/disability industry even including our friends from the APA.

I couldn't tell the difference between this article 'Hope on the Hill – ME/CFS in Washington DC' and articles posted on the HHS website.

What would be considered extremely beneficial for their patients is how they spend donations from patients. They should explain their low score on financial rating 2 stars by Charity Navigator, their large executive salaries and why theycontinue to refuse to have their finances audited by an independent reviewer.

http://www.charitynavigator.org/index.cfm?bay=search.summary&orgid=6512

http://www.charitynavigator.org/index.cfm?bay=search.summary&orgid=6512

 

[Izola]

So glad to see the bright lights on this. I thought I was pretty much alone in my digust about finding nothing usepul in their magazine or organization. And the psycho babble origins of some of that stuff they published made me want to scream. So I did. alone. And that crap about were you abused as a child? Yeh, my mother slapped me and it opened up a floodgate of invitations to exotic viral and bacterial pathogens to come after me as they wished. Well, that was a nice vent!

(I spent several exhausting years helping family members so there is a wide gap in my connection to ME issues.)

 

[justinreilly]

@Izola , unfortunately, there are a good number of uninformed people who have no clue that CAA is a parasite on them, judging from the comments and like on their blogs and Facebook.

I chuckled when you said you thought you were the only one who was disgusted about CAA! Somewhere around two years ago, the criticism of CAA was getting to an operatic pitch and overshadowed everything else here. The single longest thread in PR history is called CAA is Listening or something like that, and what they (i.e. Jennie who was there representative here; she's no longer on their board) heard was 150 pages of hate mail posts. There was also the two polls that were about 90% and 100% disapproval on PR and mecfsforums, etc, etc.

 

[justinreilly]

Then a whole bunch of frequent advocacy section posters got kicked off of here by Cort essentially for criticizing CAA too much. that's how mecfsforums started, it was all the people that got kicked off. Some of the people were a bit annoying in their extremism and repetition, but they definitely shouldn't have been kicked off. they are still banned which is ridiculous. that's one reason why the advocacy section is fairly tame/ not well attended here these days. It really is too bad.

 

[caledonia]

Then a whole bunch of frequent advocacy section posters got kicked off of here by Cort essentially for criticizing CAA too much. that's how mecfsforums started, it was all the people that got kicked off. Some of the people were a bit annoying in their extremism and repetition, but they definitely shouldn't have been kicked off. they are still banned which is ridiculous. that's one reason why the advocacy section is fairly tame/ not well attended here these days. It really is too bad.

I don't see any reason why we can't bring this up to @Mark and the board (the people now running PR).

 

[Undisclosed]

Then a whole bunch of frequent advocacy section posters got kicked off of here by Cort essentially for criticizing CAA too much. that's how mecfsforums started, it was all the people that got kicked off. Some of the people were a bit annoying in their extremism and repetition, but they definitely shouldn't have been kicked off. they are still banned which is ridiculous. that's one reason why the advocacy section is fairly tame/ not well attended here these days. It really is too bad.

I don't see any reason why we can't bring this up to @Mark and the board (the people now running PR).

I will answer some of this as I am aware of what went on a few years ago and Mark is very busy with end of year issues/articles. I can't go into details related to specific members who were banned but I can say that nobody was banned for 'criticizing the CAA too much'. I have read all the related reported posts that led to members being banned and members were banned for repeated rule breaches, disrupting the forums, creating sock puppet accounts, and some asked to have their accounts banned.

Those who asked to have their accounts banned can always contact us via the 'Contact Us' form and ask to have their accounts re-instated. We have not received any emails directly from those who feel they were unfairly banned so it's hard to review the details with them.

If anybody wants to discuss this with me in further detail you can contact me via Conversation.

Thank you.

Kina.

PS -- this thread is not the place to discuss past moderation issues.