Article: CFSAC II: A MAPP for ME/CFS?, Koh Disappoints, Mangan Man's up for ME/CFS?

You can view the page at http://www.forums.aboutmecfs.org/content.php?257-CFSAC-II-A-MAPP-for-ME-CFS-Koh-Disappoints-Mangan-Man-s-up-for-ME-CFS

 

Fantastic summary Cort! Thanks so much for taking the time and obvious energy it took to do this!!!

 

Thank you! Great job as always, but why so harsh to Dr Koh?

 

Only time will tell whether Dr. Koh is. to put it bluntly, yet another agency flack mouthing all the right words or is committed really committed to making a difference.

Not defending him, as such, but it is possible that he is sincere and genuinely wants to help us, but simply does not have enough political clout (on his own) to swing adequate funding our way.

...but the NIH is a much more important branch of the government to us; it is the research arm of the government and, in many ways, it has failed us more than the CDC does.

There is some truth to that. The CDC could not have got away with what they have, if the NIH had been more on the ball.

...the first thing [Mangan] did was announce that NIH CFS website (Trans-NIH Working Group) would use ME/CFS henceforth; a cosmetic gain,...

While in one sense it is just a cosmetic change, it does reflect a significant & positive shift in the underlying politics. Re-labelling something is often an important early step to re-positioning the politics around it and getting it taken more seriously.

 

Thank you! Great job as always, but why so harsh to Dr Koh?

I've sat through these meetings enough now to have heard the same words come out of several officials mouths. It happened at the National Press Club event about five years ago when top officials from the CDC and NIH got up and very publically poured out their concern for CFS and the need for everyone to work together to solve this terrible disorder! and then funding - already at such low levels - plummeted.

Then there was Dr. Agwunobi - Dr. Koh''s predecessor - who was so sincere and while he was being so sincere - funding continued to fall. Kim McCleary later said she thought he was running for office he was good at putting up that front.

Now there's Dr. Koh - the 'dooer' and he has helped - he, with Wanda Jones, have helped to at least get the agencies to respond to the Committee's recommendations (a big win ) but he didn't show up at all for his first year. Then, after XMRV showed up, like other officials, he did show up and said that treatment centers seemed 'so, so reasonable'; and how 'important' solving this disorder is.....very hopeful words and yet here is defending what his office has done and there are no new initiatives (outside of XMRV), no new funding and a disorder that effects about a million people is still scrapping the bottom of the barrel of the NIH for funding.

We're not asking for much money at all. Actually, in the scheme of things at the NIH, we're asking for VERY, very little. Check out my testmony - which I just posted about how there's always enough money for other disorders but never enough for CFS...http://www.forums.aboutmecfs.org/content.php?259-No-Money-Available-for-ME-CFS-Think-Again-Testimony-to-CFSAC

So I'm waiting for some action; without action to back them up those kind of words now show up for me as meaningless sincerity designed to mollify us. They used to show up for me as hopeful; now in the absence of action they show up for me as 'meaningless sincerity' - for me there's almost a cartoon bubble floating over his head saying "Where's the Beef?". Until the words - "funding for CFS will go by $10 million dollars this year" or "3 Centers of Excellence will be created in the next year" come out of his mouth - all the other words are suspect.

The key for me is that we have to look very carefully at what is done and keep them pushing them until they take action.

 

Not defending him, as such, but it is possible that he is sincere and genuinely wants to help us, but simply does not have enough political clout (on his own) to swing adequate funding our way.

There is some truth to that. The CDC could not have got away with what they have, if the NIH had been more on the ball.

While in one sense it is just a cosmetic change, it does reflect a significant & positive shift in the underlying politics. Re-labelling something is often an important early step to re-positioning the politics around it and getting it taken more seriously.

I think it must be very difficult to get more funding for CFS and other disorders like it. CFS, FM, IBS, Interstitial cytisus...they're all getting greatly underfunded relative to the numbers of people affected and the amount of distress caused. This is a kind of systemic problem for disorders like we have. So its not going to be easy for anyone to dramatically change things.

Plus our program is locked into a structure in which no one really has responsibility for the disease. So - its not easy but then again, so what? Lots of things that aren't easy that should get done actually do get done.

I was hard on Koh ('flack' was probably a bit too much ) but then again its also true that we really are not asking for alot of money. Three small COE's would cost from 3-5 million dollars a year total! That's peanuts in the NIH. My understanding is that they fund 100's of centers like that. The money we are asking for is miniscule and they still won't give it to us..........

I don't want to bash Mangan - he is one guy who is visibly trying to assist us. I like him alot and cosmetic changes can indicate that bigger changes are in store. That was a nice first step!

 

Fantastic summary Cort! Thanks so much for taking the time and obvious energy it took to do this!!!

Thanks, it was great to meet you and Dr. Lerner at the meeting

 

I think they've got to understand that actions are really the only thing that speak to us at this point. It's impossible to discern a nicely played stiff arm from someone who is really trying. And trying ain't good enough.

So for me it's Put Up or Shut Up. That goes for everyone. Little indications that the playing field is getting a little better (which is very relative in this case) help us from completely losing our minds but if there is no funding, no serious change in attitude across DHHS then I'm not even close to satisfied. Just my black and white view on this because the rope-a-dope is getting old but I'm still swinging.

Life is short - ours is shorter (and much harder than most) - so get busy people.

 

The money we are asking for is miniscule and they still won't give it to us..........

No argument there.

 

Little indications that the playing field is getting a little better (which is very relative in this case) help us from completely losing our minds but if there is no funding, no serious change in attitude across DHHS then I'm not even close to satisfied. Just my black and white view on this because the rope-a-dope is getting old but I'm still swinging.

Life is short - ours is shorter (and much harder than most) - so get busy people.

Yes, a little better is not good enough. The years are flying by....at their petty pace, unless XMRV wins out - I forsee nothing making a fundamental difference in my life - except for my mind/body stuff which helps me cope and feel better but does little to resolve my limitations - before I kick off in 20 years. None of us can expect any significant change in treatments at the rate the federal govt is moving. It takes them 10 years to do for us what other diseases get done in 6 months.

Look at where XMRV came from? It did not come from the feds! It came from the only CFS Research Institute we have. It was a shot out of the blue- a comet passing across the firmament - that no one expected. Going back to business as usual if XMRV doesn't work out is not going to be pretty.

We need action from these people, not words - action.

 

Cort, thanks for going out to talk to Dr. Koh after he talked. It might help to put a human face on the illness a little and keep it in his mind. No harm anyway. All of us who watch some or all of the meetings on video can't do these sorts of things so great that people there do what they can in person.

 

Cort-

thanks for trying to talk to koh in the hallway and meeting with mangan at the cfsac meeting!

 

I can't put into words how much I appreciate having a place to come and learn, and maybe have a chance to concentrate efforts to try and get a little recognition for our cause.

Cort, your tireless and considered efforts mean a lot. Especially to people like me who don't have much of a physical presence anymore.

For those who haven't seen it. http://www.youtube.com/watch?v=P_JUiMjKxzw&feature=player_embedded
About humanities failure to pay attention to the warning.

"A CFS patient feels the same or worse than congestive heart failure. The same or worse than late stage AIDS." Nancy Klimas

"A CFS patient feels every day significantly the same as an AIDS patient feels two months before death." Dr. Mark Loveless

Your voice helps fill the void for those of us who don't have much of one left.

I can only hope the efforts pay off sooner than you think.