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NIH Telebriefing re ME/CFS - July 10 (open to international participation)

Mary

Moderator Resource
Messages
17,335
Location
Southern California
I just received this e-mail today, so not much notice, but here it is. And I've attached a document (hopefully it works!) with international call-in numbers.

We request your participation in a telebriefing about updates on NIH’s efforts to advance research on ME/CFS. The telebriefing will be held on July 10, 2017, 12:00 until 1:00 pm ET. If you will be calling from the U.S., please use the following dial-in information for the telebriefing.
Dial-in: 866-844-9416

Participant passcode: 6930820

If you will be calling from another country, please see the attached chart for your country’s access information.
Please remember to RSVP to NIHME-CFSWorkingG@ninds.nih.gov if you plan to participate in the call.
Thank you in advance for your participation and we look forward to an engaging, thoughtful and productive conversation.
Regards,
The Trans-NIH ME/CFS Working Group
 

IThinkImTurningJapanese

Senior Member
Messages
3,492
Location
Japan
A quick search revealed this from a previous telebriefing.

Johanna Kaiser: But our disease has a larger patient population than almost any other. So there really isn’t a comparison. And what was done for AIDS is not being done for us. There was an urgency there, eventually. It didn’t take 30 years – 30 plus years like it is for us.

Johanna Kaiser: …but NIH is being stubborn and letting our lives burn to the ground.

Dr. Walter Koroshetz: That’s certainly not our intent here. We really would like…

Johanna Kaiser: But that’s the result. And you must acknowledge reality.

This is really worth the time to read. :thumbsup:

Or you can actually listen to it.
 
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Mary

Moderator Resource
Messages
17,335
Location
Southern California
A quick search revealed this from a previous telebriefing.





This is really worth the time to read. :thumbsup:

Or you can actually listen to it.

Wow - I just read the exchange between Johanna Kaiser and Dr. Koroshetz. She was phenomenal, and he seemed rather clueless, he kept saying we need more answers, and she kept saying, so fund Ron Davis, etc. and he'd say, but we need more answers in order to allocate funding - arggghhhh!
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
Wow - I just read the exchange between Johanna Kaiser and Dr. Koroshetz.

His plan to increase research is literally insane. No sane person would suggest that the solution is to have more researchers submit grants that will be automatically rejected in order for NIH maintain their 88% rejection rate.

He could not be clearer that will be no change to the Policy of No Research. Our daily suffering is a result of deliberate indifference by government agencies, inflicted on some of the most disabled people in the country.

We have clearly been denied the benefits of NIH medical research, and subjected to discrimination by government agencies and society at large, as a result of CDC and NIH actions. Those actions and refusals-to-act are violations of Section 504 of the Rehabilitation Act, which states in part:

"No otherwise qualified individual with a disability in the United States ... shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance or under any program or activity conducted by any Executive agency..."

Thirty years of phone calls, letters, lobbying, demonstrations, etc. have had little effect. It's well past time to take these agencies to court and force them to do their jobs.
 

Dolphin

Senior Member
Messages
17,567
His plan to increase research is literally insane. No sane person would suggest that the solution is to have more researchers submit grants that will be automatically rejected in order for NIH maintain their 88% rejection rate.

He could not be clearer that will be no change to the Policy of No Research. Our daily suffering is a result of deliberate indifference by government agencies, inflicted on some of the most disabled people in the country.

We have clearly been denied the benefits of NIH medical research, and subjected to discrimination by government agencies and society at large, as a result of CDC and NIH actions. Those actions and refusals-to-act are violations of Section 504 of the Rehabilitation Act, which states in part:

"No otherwise qualified individual with a disability in the United States ... shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance or under any program or activity conducted by any Executive agency..."

Thirty years of phone calls, letters, lobbying, demonstrations, etc. have had little effect. It's well past time to take these agencies to court and force them to do their jobs.
You are entitled to your opinion but this is what most other illnesses have to do also.
Only a percentage of all grants get funded.

We do have a problem that there is not as many researchers putting in applications for our illness as many other illnesses. If we can raise money to support them, it should lead to more funding from the NIH.

It is a different scenario to what has happened in the UK where, apart from in 2011, the Medical Research Council has turned down biomedical grant applications while funding quite a lot of research by psychologists and psychiatrists of the CBT and graded exercise school of thought.

In the US, if doubled the number of grant applications go in, it should double the funding.

In the last 7-10 years, some in the ME/CFS community have been donating and/or raising money for research, but I know in the years before that in the 30 years you refer to, a lot of people were not donating and/or trying to fund raise for research, yet often had money for very speculative therapies. I don't mind people trying therapies but I think people should try to give at least 1% of such spending on donations to research to move the field forward.
 
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Gemini

Senior Member
Messages
1,176
Location
East Coast USA
We request your participation in a telebriefing about updates on NIH’s efforts to advance research on ME/CFS.. on July 10, 2017, 12:00 until 1:00 pm ET.

If you will be calling from the U.S., please use the following dial-in information:

Dial-in: 866-844-9416

Participant passcode: 6930820

Please remember to RSVP to NIHME-CFSWorkingG@ninds.nih.gov
Bump, this starts in a few hours.
 

me/cfs 27931

Guest
Messages
1,294
In the US, if doubled the number of grant applications go in, it should double the funding.

In the last 7-10 years, some in the ME/CFS community have been donating and/or raising money for research, but I know in the years before that in the 30 years you refer to, a lot of people were not donating and/or trying to fund raise for research, yet often had money for very speculative therapies. I don't mind people trying therapies but I think people should try to give at least 1% of such spending on donations to research to move the field forward.
A quick way to double private research funding is to double the number of ME/CFS diagnosed. Simply getting from 1/8 ME/CFS diagnosed to 2/8 diagnosed should do it.

Personally, I place the failure to diagnose squarely on the shoulders of the NIH and CDC.
 

Londinium

Senior Member
Messages
178
Some highlights so far for those unable to join:
  • Good shoutout to the InvestInME conference :)
  • NIH had good discussions with NIHR and MRC in UK about collaborative research (ruh-oh, hopefully this doesn't mean NIH will now start funding more BPS...)
  • Mark Davis at Stanford seems to have some new interesting findings, still to be confirmed prior to publication.
 

Never Give Up

Collecting improvements, until there's a cure.
Messages
971
Great speech by Sonia Heller. She strongly advocated for more funding, Walter Koroshetz, M.D agreed with her that the funding does not even come close to meeting the burden of disease and agreed that the current funding is peanuts!
 

Anne

Senior Member
Messages
295
Some highlights so far for those unable to join:
  • Good shoutout to the InvestInME conference :)
  • NIH had good discussions with NIHR and MRC in UK about collaborative research (ruh-oh, hopefully this doesn't mean NIH will now start funding more BPS...)
  • Mark Davis at Stanford seems to have some new interesting findings, still to be confirmed prior to publication.

I'm very worried about the NIH discussions with MRC and NIHR in the UK. If I'm not mistaken a meeting took place before the Invest in ME Research conference, coordinated by the UK CMRC (who thereby, in my opinion, judging this from the outside, seem to have done some "speaker stealing").

As we know the CMRC is co-chaired by Crawley and has the goal of getting the very dubious MEGA study started. This will not be a proper ME/CFS study, but once again a study on broader "fatigue" (Crawley sometimes says "ME" but she always means "chronic fatigue").

Now, if NIH had asked to meet MRC and NIHR in a pre-colloquium meeting facilitated by Invest in ME Research, I would have felt very hopeful!

As it is, I instead feel very worried. Adding to my worry is the fact that Nath chose to not attend the excellent and purely biomedical Invest in ME Research colloquium, but will be attending the not-purely-biomedical CMRC conference in a couple of months.

Those of you who are in touch with NIH and CDC, could you please convey to them that MEGA is not a good way forward? A much better solution would be to collaborate with the already existing London Biobank (Nacul and others), and with Invest in ME Research. And that all research done in collaboration with the UK needs to be biomedical and use CCC.
@medfeb @jspotila @Emily Taylor @znahle
 
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bspg

Plant Queen
Messages
547
Location
USA
Great speech by Sonia Heller. She strongly advocated for more funding, Walter Koroshetz, M.D agreed with her that the funding does not even come close to meeting the burden of disease and agreed that the current funding is peanuts!

Any more updates? I totally forgot this was today :(