Video - 8 minutes: Watch Gulf War Veteran Testify About the Harms of the IOM Report; GET and CBT for

[Nielk]

Written testimony here

 

[Sasha]

I watched this a while back - it's very impressive testimony and extremely chilling. If this is how the VA and the US govt have treated its own forces veterans, it speaks very poorly of what we PWME can expect.

I think Mr Hardie starts talking about the IOM about 5:00 minutes in.

I know that the situation with the HHS and IOM is complex but GWI is basically the canary in the mine for us. The IOM have no expertise in creating diagnostic guidelines and they've stacked the GWI with people without expertise in GWI. The few who do have knowledge of it are stacked towards the psychosocial model.

If it wasn't for this, I'd feel much less doubt about HHS's intentions for ME/CFS.

 

[Nielk]

It is chilling listening to Hardie. There are so many parallels to our own situation. There is no evidence or past record to show us that we will be treated any differently from the GWI patients.

 

[Valentijn]

I think they're as pissed off as we are. But with guns and combat training

 

[Nielk]

The sad part though is that this "war" is so stacked against us that we have no chance in winning.

 

[Seven7]

Is there a way for our patient's advocates to reach to the organizers of GWS to support signing our letter????

 

[AbbyDear]

does not surprise me. its bad difficult enough to research the technical underlying issues/causes, without bureaucratic hindrance and misdirection. it is so much easier to blame the unseen, and undocumented (via blood test or imaging) on psych issues. there seems to be push in that direction.

 

[readyforlife]

Wow very disturbing. He could of been talking about cfs/me it was so similar. If our government is treating these men and women who served our country like this, we don't have a chance in hell. He talks of government lies and deceit sounds so familiar. I'm sitting here in shock after watching that video.

 

[Nielk]

This is worth a view if you have not done so yet in order to better understand the stakes of the IOM contract.

 

[Nielk]

Mr. Hardie states in his testimony to IOM panel:

At its first meeting, presenters before a new IOM "treatments" panel diverged radically from both the Congressional authorizing language and established science. The panel was charged by VA to conduct a literature review rather than to consult with knowledgeable medical practitioners experienced in treating ill Gulf war veterans. And nearly all of the first presenters focused on "stress-as-cause", psychological, and psychosomatic issues – all debunked years ago.
For example, one of the stress-as-cause presenters to the IOM “treatments” committee said, “Stress has been indicated as a factor in Gulf War Illness,” citing three studies as reference. I immediately recognized one of cited studies, as its principal investigator had presented her findings to the RAC on which I serve, noting that what she found in ill Gulf War veterans was distinct from and not PTSD. The researcher’s actual conclusions were: “Despite the overlap of chronic unexplained health symptoms and PTSD in GWV, these symptom constellations appear to be biologically distinct.” This blatant mischaracterization of the research conclusions was not unique. And similar to other presenters that day, this presenter focused the second half of his talk on “stress management via relaxation-response (RR) therapies” – a mere band-aid for suffering veterans. The ill Gulf War veterans who called in to listen to the panel's two public meetings were of course outraged.

(my bold)

 

[Nielk]

For those who think the IOM will be receptive to us and transparent - Hardie states:

A written request by three of us veterans to the IOM President for a copy of the VA-IOM contract and the presenter selection criteria was minimized and never fulfilled

 

[justinreilly]

I asked the contact at IOM for MEcfs for the MEcfs contract and she said IOM will not release it. She suggested asking HHS. I have sent an email, we'll see.

 

[Bob]

This is worth a view if you have not done so yet in order to better understand the stakes of the IOM contract.

I just watched the video again. It's well worth watching for any one interested in the IOM contact. If you don't want to watch the whole video then watch the section about the IOM which starts at 5.00. He says that he has been told that the IOM's approach for creating a diagnostic criteria (via a review of the literature) was unprecedented, and that the VA had been instructed by law to focus on expert physicians involved in the illness and had ignored this. And he pointed out that there was a lack of good literature because the field had been starved of good research. As others have said in this thread it all sounds very familiar! And there are uncanny parallels between the wider work of the VA and what the ME community has experienced over the years.

 

[Firestormm]

I just watched the video again. It's well worth watching for any one interested in the IOM contact. If you don't want to watch the whole video then watch the section about the IOM which starts at 5.00. He says that he has been told that the IOM's approach for creating a diagnostic criteria (a review of the literature) was unprecedented, and that the VA had been instructed by law to focus on expert physicians involved in the illness and had ignored this. And he pointed out that there was a lack of good literature because the field had been starved of good research. As others have said in this thread it all sounds very familiar! And there are uncanny parallels between the wider work of the VA and what the ME community has experienced over the years.

Interesting piece from Forbes, Bob, I don't know if you'd read. From June. Here.

 

[Bob]

Interesting piece from Forbes, Bob, I don't know if you'd read. From June. Here.

Thanks Russell. That article links to two other interesting articles in relation to the difficulties (political and medical) that the Gulf War Illness patient community experiences:
http://www.forbes.com/sites/rebecca...a-changes-to-gulf-war-illness-research-panel/
http://www.forbes.com/sites/rebecca...p-in-solving-the-mystery-of-gulf-war-illness/

 

[Bob]

I've found the full video that the 8 minute segment is taken from.
I found it very interesting.
It shows further parallels between ME/CFS and GWI/CMI.

Notice that the representatives from the IOM (first panel of witnesses) and the Dept of VA (second panel of witnesses) tend not to answer the important questions put to them. Instead, they respond ambiguously, and answer questions that weren't put to them.

When they get to the second panel of witnesses, watch out for Dr Hunt, who seems to be their very own SW. And watch out for the slides that are shown.
And notice the apparent all-round incompetence of the VA leadership. Perhaps it's intentional incompetence.

www.youtube.com/watch?v=Zr2sAlf4QeQ