Article: ME/CFS The Road Ahead in 2012: Pt I The Best of Times, The Worst of Times

Article: ME/CFS The Road Ahead in 2012: Pt I The Best of Times, The Worst of

You can view the page at http://forums.phoenixrising.me/content.php?536-ME-CFS--The-Road-Ahead-in-2012-Pt-I--The-Best-of-Times-The-Worst-of-Times

 

Thank you Cort for this informative analysis of the current history of studies going on for ME/CFS. By giving us a total picture, the failure of the WPI doesn't seem that traumatic anymore, although still very disappointing. I agree with your optimism for the future. It certainly seems that many quality studies are in place now and hopefully more will join in. It seems like we are finally being looked at as a serious illness that demands serious answers.

 

Thanks Nielk - I was surprised when I went back and actually looked at all the new stuff going on - how much there was. Aside from the XMRV and WPI problems - it was a really good year A successful Lipkin study at the CFI alone could make a HUGE difference.

 

Forgot the vikings in Norway with b-cell depletion.
There is some interesting stuff going on, i hope it hits mainstream medicine quickly.

cheers!!!

 

Thanks for a very good "read" Cort - most encouraging for us all in the UK.

 

Yeah for the Vikings! What a head turner that was. PHANU (article on them coming up shortly) has felt CFS has auto-immune components for years. Another successful study would make a huge impact and several groups, besides Mella and Fluge, may get one going.

 

Thanks Enid

 

Great article, Cort! It's very encouraging to see all the work that's going on around the world.

 

Thanks Cort for your encouraging article. I agree that things are looking up for us, despite the WPI/XMRV debacle. I'm looking forward to the results of all the new studies and also to Part Two of your article.

Claire

 

PHANU/Bond uni group did mention auto immune component right from the start of the NK function testing.
I believe there next study will be a smaller group of people and they will continue the nk function testing in these studies but i dont know what the rest will incoporate, but i have let them know my interest to take part in their next study, So could be interesting, if i get in hopefully i can let u know whats going on. If my nk function tests are to go by i think i stand a good chance to get in as my nk function has been very low. ALso i think they were appyling for another govt grant, which they recieved on the first study.

I would like to know more about the partnership with bond uni and dr peterson, if anyone has more info, speculating here but maybe a treatment trial with the antiviral med he is involved with???

cheers!!!

 

Cort, thankyou for your article. As always, it is informative and readable, a difficult task for such a complex topic.

I wish I could share your optimism. Even if better treatments come out of these studies, few of us will benefit. In the U.S., and it seems most other places as well, the overwhelming majority of patients can not receive new treatments until they are 'generally accepted'. But how can they become 'generally accepted' when the doctors are all waiting for their peers to adopt new treatments first?

As an example I'm thinking of Peckerman's 2003 study of impedance cardiography. As you well know, the study correlates cardiac output with disability. And yet, nearly ten years later, is anybody actually receiving this test, so that we can at least receive some disability money while wating for new treatments? How many years will we have to wait for the work of Pacific Fatigue Lab to be recognized by the 'medical community'? Twenty, thirty years? I can't wait that long. I know you can't either.

 

Thanks Claire - stay tuned...lots of stuff going on with the non-profit research foundations..... If they can deliver the goods that should effect the other end - the feds.....hopefully we'll get a tail wagging the dog type thing going.

 

Didn't know you were 'down under' heapsreal. Got an interview with Dr. Marshall Gradisnik coming up soon. They've got alot more cash on their hands and I know they're interested in a Rituximab study.

From what I heard with Chimerix - it doesn't appear to be happening right but Dr. P says not to give up hope.

 

Understand your dismay jimells and I think everybody shares it to some degrees. I thought the Pac Fatigue work with aerobic functioning was going to turn everything around (and I think they did too). It has made a adifference and it may end up being the game changer we thought it would be but its going to take longer, quite a bit longer - obviously.

I remember Peckerman's dramatic study well - it IS a crying shame and it points to how important 'politics' is. Peckerman was part of Natelson's NIH Funded CFS research Center (anybody remember those?). When CFS moved to the ORWH they were ALL shut down - and Peckerman's work was stopped in its track. It shows how important advocacy is....there wasn't back then (and still isn't) and it was allowed to happen. That was over 10 years ago and funding has dropped dramatically..

It's a long pull - that's for sure.

 

Yes they mentioned the smaller ritux study when the first started there own nk study, before ritux was common knowledge. Hoping theres something interesting in it, there keeping their cards close to their chest.

cheers!!