Solve ME/CFS Initiative Chief Reports Significant Progress at NIH

[Cort]

Several pieces of good news regarding the NIH's effort have popped up recently.

The Solve ME/CFS Initiative Reaches Out

NIH will spend whatever is necessary for this study to get answers to some basic questions about the clinical and biological characteristics of ME/CFS. Vicky Whittemore - NINDS​

Walitt - Carol Head - the head of The Solve ME/CFS Initiative - reported yesterday on the outcome of a phone call to Vicky Whittemore, the NINDS liaison to the Trans NIH Working group - about Brian Walitt and other issues.

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[/fright]Whittemore told Carol she was "very receptive" to the SMCI's "strong opposition" to Dr. Walitt continuing with the study but that the lead investigator, Avindra Nath, was in charge of the Clinical Center study appointments.

Patient Participation - The NIH is clearly not used to dealing with such an active patient community and Carol urged that patient participate with the NIH in order to avoid the missteps that have plagued the study thus far. Whittemore went further than I expected when she identified three areas for patient feedback:

1. Include an open period during each Trans-NIH Working Group meeting in which patients can ask questions and offer their feedback;
2. Include advocates on the smaller working groups created in conjunction with the study; and
3. Hold regular teleconferences throughout the study so that community members can receive updates on progress from the investigators themselves. The first conference call is expected to be announced this week.

Cost of the Clinical Center Study - Because the protocol for the study is not complete Whittemore said it was impossible to determine the costs. In an email, however, she said "NIH will spend whatever is necessary for this study to get answers to some basic questions about the clinical and biological characteristics of ME/CFS.". (Emails are important because they are essentially NIH documents).

Good Times Coming? NINDS Official Says ME/CFS Community Will Be Pleased - Whittemore also stated "I think you’re really going to be happy with what we’re planning". Coming from Vicky Whittemore who knows full well what the ME/CFS community wants, this is a significant statement.

Don't expect $100 million but we could be looking at a couple of RFA's and possibly, given Dr. Collin's comments - clinical trials on Ampligen or Rituximab or both. Those with the big Clinical Center trial involving 20+ researchers should give us a good foundation for future funding increases.

• Check out the Solve ME/CFS Initiative post here...

Forget the Disappointing DHHS Response to CFSAC's Recommendations

The DHHS Response to CFSAC's requests - no RFA's - no sign of increased funding - was bitterly disappointing but in a letter to Brian Vastag, Dr. Collins said forget about that response. It was made before the new Trans NIH Working Group had been formed. Collins also reiterated that the patients in the Clinical Center trial will meet the strictest criteria and that PEM will be required and stated that the Working Group is working very hard...

The Working Group is working very hard to put together research strategies that directly address some of the CFSAC recommendations, as well as those that were identified in the IOM report and the P2P workshop.

NIH Increasing Funding on Chronic Fatigue Syndrome Last Year

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[/fright]Finally Jennie Spotila's analysis of NIH funding in 2015 indicated that the NIH spent 20% more in 2015 on ME/CFS than it did in 2014 (or 13, 12, etc.). While we need much more funding the increased funding - probably the result of several late grant approvals - suggests that the NIH started to increase spending at the end of last year. ​

Jennie also reported that for the first time since 2009 no psychological studies were funded and, surprise of all surprises, ME/CFS funding bucked the trend at the NIH: it received a bigger increase in funding that 80% of the other diseases and conditions that received increases at the NIH.

• Find out more here

Conclusion

It's all good news. Funding started bumping up last year, the NIH is being responsive and is welcoming patient participation, and Dr. Collins remains involved. The NIH is moving in the right direction almost everywhere.

The key to our long term hopes, of course, is the strategic plan. We'll know whether we can REALLY celebrate when that is released. Given Vicky Whittemore's recent statement, there's every hope it will be a good one.

 

[Hilary16]

I am so appreciative of your continuing updates Cort, thank you. While I live in Canada, the ripple effect of advocacy in the U.S. is always beneficial to patients everywhere.

 

[IrisRV]

Thanks, Cort, for keeping us informed. This is great news!

We'll know whether we can REALLY celebrate when that is released.

I'm going to celebrate a bit now. This is better news than we've heard in a long time. Even if it doesn't all pan out, there's got to be some good come of it.

 

[Cort]

I am so appreciative of your continuing updates Cort, thank you. While I live in Canada, the ripple effect of advocacy in the U.S. is always beneficial to patients everywhere.

Indeed it is. It's good to hear some good news