• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Sept 10: CDC 'conference call' including Unger and Lipkin

Nielk

Senior Member
Messages
6,970
Sequestration is a big puzzle to me.

If you look at the funding by disease table, http://report.nih.gov/categorical_spending.aspx many categories see their budhet increase by a few millions, including cancer, asthma, complimentary and alternative medicine (OMG 487 millions), digestive diseases, epilepsy, estrogen, genetics and genetic testing, coronary heart disease, HIV/AIDS (increase by 27 millions from 2013 to 2014!!!).

The fact remains that there is so much stigma surrounding ME/CFS that HHS does not think we are worthy of more than 5millions.


There is a category on that NIH funding table per disease for "Emerging Infectious Disease" with over 2 billion dollars funded! Can't we get part of that pie?
 

Kati

Patient in training
Messages
5,497
There is a category on that NIH funding table per disease for "Emerging Infectious Disease" with over 2 billion dollars funded! Can't we get part of that pie?
I would suspect prt of that pie went to the Middle East Respiratory Distress Syndrome research, because see, it becomes a global threat if not treated. I wonder how many millions it cost.
 

Nielk

Senior Member
Messages
6,970
Maybe the trick is knowing how to apply and under what category. maybe our money would be better spent in hiring a professional who understands how the system works to apply for NIH grants.
 

readyforlife

Senior Member
Messages
137
So much money is being spent right now on different research projects for CFS/ME. I wish they would all come together and focus on one thing at a time. I know we shouldn't have all of our eggs in one basket, but if the best researchers could come together and agree yes lets look at the microbiome or what ever other area they think might be the problem. We have so many great researchers that are asking for donations but it spreads our money thin. We need to focus on one area and send our money to them. below is a small list of cfs/me researchers who need money for their work. But who is doing the best research and where is our money being spent with the biggest inpact?

http://wpinstitute.org/, http://simmaronresearch.com/, http://www.nova.edu/nim/, http://chronicfatigue.stanford.edu/, http://cii.columbia.edu/default.aspx ETC...
 

readyforlife

Senior Member
Messages
137
The NIH claims that the reason they fund so little is because so few people are applying, but apparently Lipkin is not finding that to be the case when he applies.


Are you suggesting that Lipkin has applied for grants for the microbiome study and has been denied?
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
i don't think there is any plans to cover people's hotels in order to perform an exercise test. I would and will fly 2hours over in order to do that test. I would do a 2 days even though the last time I did it I felt like I was run over by a truck after day 1.

Fatigue scale after the test is not good enough to tell whether we are deconditioned or suffer from PEM. It is patient perception, more or less. Nothing measurable or scientific.


I don't know how this could work, but hasn't Dr. Enlander been doing 2 day exercise tests and a fairly large group of patients and funded by a grant? Is there anyway his results could be used--especially if he was funded by a government grant?

Nielk, do you know his source of funding?

Sushi
 

Ember

Senior Member
Messages
2,115
So perhaps a bit of friendly and constructive encouragement might go a long way. Beth Unger seems to be listening and engaging, but getting there slowly.
Dr. Unger has thumbed her nose at us. It took her over ten days to deliver her August 30 denial to advocates, and it will likely take her over four more weeks to post a synopsis of her taped comments. She writes about the need “not only for a case definition but also for reproducible standardized approaches to applying it, as well as for biomarkers to refine subgroups within the overall CFS patient population.” Yet, as Dr. Snell points out, her multi-site study design “does nothing to validate the diagnostic value of repeated CPET testing.”

In the context of the complete devastation of ME, Dr. Unger should spare us her solicitude over the hardship of “an additional overnight stay for those patients who travel long distances to attend clinic.” Dr. Unger is selling us short.
 

Nielk

Senior Member
Messages
6,970
I don't know how this could work, but hasn't Dr. Enlander been doing 2 day exercise tests and a fairly large group of patients and funded by a grant? Is there anyway his results could be used--especially if he was funded by a government grant?

Nielk, do you know his source of funding?

Sushi


Dr. Enlander's study is privately funded. One of his patients donated one million dollars for this project.
He does not do a two day excercise test though. It is a one day test with three consecutive days of the patient coming back for blood draw.
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
I've been talking to advocates about how we go about a) getting an RFA and b) getting authorization legislation through Congress. All I can say is that work is being done. BUT the case definition issue is a huge and immediate barrier. If we have a crappy definition, money won't solve the problem. The most important thing we can do right now is push the definition issue, in my opinion.

Chicken and egg. Better definitions come from more people being involved and more eyes on the ball. Plus it won't be about definitions if we have specific biomarkers for specific groups..

The definition issue isn't going to solve itself while the community is so divided, but an RFA can help right now.

We need to push for an RFA for studies like those proposed by Lipkin to get funding. The justfication is the lack of ongoing research capacity and funding, which is linked to CFS being the single most neglected disease in terms of disease burden vs NIH funding. It is still neglected by an order of magnitude compared to almost every other category even if you assume a prevalence as low as 0.1%.

I propose something like a petition at change.org, it could work if there is a uniting of the international community on this issue, similar to the support gained for the Rituximab study in Norway.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Dr. Enlander's study is privately funded. One of his patients donated one million dollars for this project.
He does not do a two day excercise test though. It is a one day test with three consecutive days of the patient coming back for blood draw.


Wasn't the Lights' study that? Single exercise challenge then repeated blood draws? Spectacular results.

Nielk - maybe Dr Snell could help with your idea about getting the names of patients willing to do the two-day test and could consult on whether it's desirable to do that in a self-selected subgroup. That could be a workable compromise but he's maybe the best judge of whether it would do the job.
 

Otis

Señor Mumbler
Messages
1,117
Location
USA
Thanks for the repost of the blog link Sasha. On the blog comments 'Maxine' points out that she would probably have PEM/PENE just from the trip preparation and travel. Therefore the first day might not be a true baseline. For a one day test the results might reflect a better PEM picture - albeit not all associated with the test. But that for a two day test, measuring the difference between day 1 and 2 would likely result in a diminished drop-off in the data collected (which, by the way, is far more than AT) because day one was collected in a PEM state

I think this brings up an interesting topic. How much rest is required to bring a patient to a valid baseline? I wonder if Snell/Stevens have considered this. Any patients of theirs out there. I got the impression from Jennie she might have traveled to Stockton.