NIH Director Pushes ME/CFS as Advocates Press Politicians

Cort

Founder of Health Rising and Phoenix Rising
Staff member
"The Solve ME/CFS Initiative is extremely concerned for the future of ME/CFS research if the proposed federal budget is adopted without modification. " SMCI
The Bad News - the President's budget proposal asks for massive potential cuts at the biggest medical research funder on the planet - just as chronic fatigue syndrome (ME/CFS) research was finally gaining some momentum. If any diseases get cut at the NIH it's probably going to be those like MECFS or fibromyalgia…

[fright]
SMCI-meeting-2017.jpg
[/fright]Good News
- the budget proposal has galvanized advocates and in doing so has revealed the emergence of a more strategic and comprehensive approach to ME/CFS advocacy than we've seen before.


The key to that - SMCI President Carol Head's decision, for the first time so far as I know in the history of chronic fatigue syndrome (ME/CFS), to fund a full-time position to advocate for ME/CFS.

The person in charge of that, Emily Taylor (in the middle of the picture to the right), has extensive experience in both grass-roots advocacy and Capitol Hill work. Health Rising will have an interview with her soon.

Emily was hired last year and has made her presence known. Check out what the SMCI and MEAction were up to last week in their thirty meetings on Capitol Hill.

  • Proposed Language Supporting ME/CFS in the DHHS Budget Committee Report -The SMCI is trying to insert language supporting ME/CFS at the NIH and CDC. Missing that for a couple of years almost lead to the entire CDC's ME/CFS program being eliminated…
  • ME/CFS Resolution - The last letter from Capitol Hill got some recalcitrant Institutes to provide funding for the ME/CFS research centers. Now the SMCI and others are working on a Senate resolution stating that the Senate's position is that solving ME/CFS is an urgent matter - providing another tool advocates can use to push for more action by the NIH and CDC
  • International ME/CFS Day (Week!) Comes to DC - the SMCI secured space in the capitol and potential sponsorship for organizing their May advocacy WEEK for a big advocacy push (sign up here if you are interested in participating in ME/CFS Advocacy Week in May)
  • Got Senators and Congressmen and Women on Board to helps us out in our concentrated push to advance ME/CFS
  • Getting ME/CFS Back into the "alternative NIH" - the Congressionally Directed Medical Research program (CDMRP) - Had conversations with Senators and staff about getting ME/CFS back into this congressionally funded program that provides funds for medical research that impacts the military or military personnel.
  • Called for the retention of the CDC's Prevention and Public Health Fund for the Centers for Disease Control - that fund - which is eliminated under the President's budget proposal - just happens to be the sole source of the line-item funding for the CDC's ME/CFS research program ($5.4 million/year).

The good news is that the SMCI reported that their conversations on Capitol Hill suggest that the President's attempt to slash the NIH budget will likely be met with opposition on both sides of the aisle.

With the SMCI and its full-time advocate in action mode, MEAction providing a central advocacy site, and groups like the US Working Group working hard, our advocacy future is looking brighter than I can remember. This SMCI commitment to produce a "
coordinated strategic plan to expedite government response and investment for ME/CFS" is particularly welcome.

Directors of NIH and NINDS Publicly Commit to ME/CFS
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a perplexing disease that biomedical research desperately needs to unravel Dr. Francis Collin and Dr. Walter Koroshetz
The NIH Directors Blog Francis Collin posts every week or so usually involves advances the NIH has made such as how sleep resets the brain, or how the NIH has pioneered a new technological breakthrough or on emerging health risks such as the Zika virus.

[fright]
Collins,-Francis.jpg
[/fright]I've looked through months of Collins blogs and I've never seen a post like "
Moving Toward Answers in ME/CFS". It doesn't herald a breakthrough but instead declares the NIH's commitment to solving a disease - and indirectly provides something of an apology for the past.

Collins and the National Institute of Neurological Diseases (NINDS) director, Dr. Walter Koroshetz, co-authored the blog. It's direct communication from two of the highest profile NIH officials to the NIH itself that ME/CFS is a real and serious disease that the NIH is committed to solve.

The blog hits all the right notes. Imagine, they say, living a vigorous life only to wake one day with a cold that not only doesn't lift but worsens. Imagine not being able to exert yourself; not being able to work or go to school. Finally, imagine that your doctors don't know anything about your disease.

Imagine going to work or school every day, working out at the gym, spending time with family and friends—basically, living your life in a full and vigorous way. Then one day, you wake up, feeling sick. A bad cold maybe, or perhaps the flu. A few days pass, and you think it should be over—but it’s not, you still feel achy and exhausted. Now imagine that you never get better— plagued by unrelenting fatigue not relieved by sleep. Any exertion just makes you worse. You are forced to leave your job or school and are unable to participate in any of your favorite activities; some days you can’t even get out of bed. The worst part is that your doctors don’t know what is wrong and nothing seems to help. Collins and Koroshetz
Collins and Koroshetz injected a note of urgency when they called ME/CFS a perplexing disease that biomedical research desperately (desperately!) needs to unravel. They referred to a possible hypometabolic state and gave Naviuax's unusual "dauer" hypothesis a thumbs up, and suggested that a chronic infection or autoimmune process are possibilities as well. Nowhere is anything psychological mentioned.

The blog was clearly designed to enroll NIH researchers in the possibility of studying ME/CFS. As much as any other disorder, they said, ME/CFS is in need of a concerted effort by the scientific community.
"ME/CFS, as much as any other disorder, is in need of a concerted effort by the scientific community to understand its biological basis."
Collins and Koroshetz then proceeded to explain the NIH's new approach: the three research centers, the intramural study and the supplemental grants. They noted the urgent need for larger, more rigorous studies, and finally - in a message to the long-suffering ME/CFS community - acknowledged the suffering and frustration present and the paltry amount of research done so far.

We recognize and empathize with the suffering experienced by people with ME/CFS and their frustration that so little is known and so little research has been done to find answers. We aim to change that. The NIH is committed to unraveling the underlying biologic cause(s) of ME/CFS as swiftly as possible, and promoting research that will inform the development of effective strategies for treatment and prevention of this devastating condition.
Collins and Koroshetz' blog doesn't provide new funding for ME/CFS (the budget is probably set for the year) but it does send a public call-out to NIH researchers stating (in case they thought differently) this disease is as real as any other disease and deserves a concerted effort to be understood. The NIH, they declared, is committed to helping with that.

Advocates will be able to use Collins and Koroshetz’ blog to call for more funding if and when the NIH falters. (Patients can also use to educate doctors, family and friends.) Collins didn't dump a lot of money on ME/CFS, but he did keep his promise to increase funding significantly (it about doubled), and gave it a way to increase further if the research centers prove productive.

Throw in the SMCI's increased commitment to advocacy, the presence of MEAction, the US Action Working Group and the support from Francis Collins and we may be set to rock and roll over the next year.

First, though, we need to ensure that the clear and present danger the recent budget proposal presents is nullified.
(If you're having trouble with the link to the Collins blog you can read it below.
Moving Toward Answers in ME/CFS | NIH Director's Blog
Moving Toward Answers in ME/CFS

Posted on March 21, 2017 by Dr. Walter Koroshetz and Dr. Francis Collins

Thinkstock/Katarzyna Bialasiewicz

Imagine going to work or school every day, working out at the gym, spending time with family and friends—basically, living your life in a full and vigorous way. Then one day, you wake up, feeling sick. A bad cold maybe, or perhaps the flu. A few days pass, and you think it should be over—but it’s not, you still feel achy and exhausted. Now imagine that you never get better— plagued by unrelenting fatigue not relieved by sleep. Any exertion just makes you worse. You are forced to leave your job or school and are unable to participate in any of your favorite activities; some days you can’t even get out of bed. The worst part is that your doctors don’t know what is wrong and nothing seems to help.

Unfortunately, this is not fiction, but reality for at least a million Americans—who suffer from a condition that carries the unwieldy name of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a perplexing disease that biomedical research desperately needs to unravel [1]. Very little is currently known about what causes ME/CFS or its biological basis [2]. Among the many possibilities that need to be explored are problems in cellular metabolism and changes in the immune system.

A number of studies suggest that abnormalities in cellular metabolism, a complex biological process that the body uses to create energy [3][4][5], may underlie ME/CFS. A recent study of metabolite pathways in blood samples from people with ME/CFS reported a signature suggestive of a hypometabolic condition, similar to a phenomenon biologists have studied in other organisms and refer to by the term “dauer” (a hibernation-like state) [5]. A number of other studies have suggested that changes in the immune system may play a causal role in ME/CFS [6][7][8], either due to a post-infectious autoimmune process or due to a unknown chronic infection.

To date, most studies in ME/CFS have looked at relatively small numbers of people with ME/CFS and employed different methods—and rarely has a finding been replicated. Given the heterogeneity of the illness and complexity of the assays, rigorous confirmatory studies in larger groups of people with ME/CFS are necessary to provide the evidence base for effective therapy development. ME/CFS, as much as any other disorder, is in need of a concerted effort by the scientific community to understand its biological basis.

The NIH is committed to stimulating additional research to reveal the causes of this debilitating disease. ME/CFS is such a complex condition, affecting so many body systems, that we do not know where the answers will come from. Informed by results from a 2014 ME/CFS workshop [9], NIH initiated a call to action to all of its relevant Institutes and Centers in October 2015. The resultant NIH research effort, led by Trans-NIH ME/CFS Working Group, leverages an impressive scope of expertise across the NIH to attack this research gap.

The Trans-NIH ME/CFS Working Group recently solicited research applications to seed a nationally coordinated approach to understand the cause(s) and mechanisms of ME/CFS. In January, NIH issued two Funding Opportunity Announcements (FOAs). These FOAs seek to establish a research consortium for ME/CFS research, including a coordinating center to facilitate collaborative science among the sites and enable widespread data sharing. The consortium will provide a foundation upon which rigorous ME/CFS research can build to make new discoveries, validate research findings, and attract new investigators from various disciplines to study ME/CFS.

The research consortium is just a first step toward growing an innovative and vigorous research community to focus on this disease. The NIH is always open for other scientists to submit research grants on ME/CFS, and most NIH funding goes to these regular grant proposals, which are reviewed on a three times per year cycle. In addition, a variety of other research initiatives were recently launched. The NIH awarded seven Administrative Supplements to expand ME/CFS research in current grants. These projects use state-of-the-art technology to pinpoint genes that may be involved in the disease and to reveal how specific immune cells play a role in ME/CFS. Some of these projects will zero in on potential biomarkers, which are desperately needed to help with diagnosis and for tracking disease progression. Descriptions of these awards can be found at: https://www.nih.gov/mecfs/funding.

The NIH is also initiating ME/CFS research at the NIH Clinical Center in Bethesda, MD. Led by Dr. Avindra Nath, an expert in neurovirology and infections of the nervous system, dozens of investigators from seven of NIH’s Institutes and Centers will carry out an extremely detailed and comprehensive evaluation of several dozen people with ME/CFS, focusing on those whose symptoms can be clearly traced to an infectious-like illness and who have been sick for less than five years. These volunteers will undergo a comprehensive battery of tests, including blood draws and brain scans, to help researchers learn more about the clinical and biological features of this disease.

One of our goals is to improve communication about these research efforts to individuals with ME/CFS and advocates who have been affected by this devastating disease. We host regular telebriefings, which enable NIH staff to update the community on our activities and provide ME/CFS stakeholders with an opportunity to ask questions and offer their perspectives.

You can learn about NIH’s ME/CFS-related efforts and briefings by visiting the ME/CFS website at www.nih.gov/mecfs. If you would like to receive periodic updates from NIH by email, please visit the ME/CFS website and click on “Join our listserv.”

We recognize and empathize with the suffering experienced by people with ME/CFS and their frustration that so little is known and so little research has been done to find answers. We aim to change that. The NIH is committed to unraveling the underlying biologic cause(s) of ME/CFS as swiftly as possible, and promoting research that will inform the development of effective strategies for treatment and prevention of this devastating condition.

Note: Walter Koroshetz, M.D. is Director of the National Institute of Neurological Disorders and Stroke (NINDS), NIH; Francis Collins, M.D., Ph.D., is the Director of the National Institutes of Health (NIH).
 
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GG

Well-Known Member
Why you such a negative nancy? "If any diseases get cut at the NIH it's probably going to be those like MECFS or fibromyalgia…"

Seems like HIV could take a big hit, how much more do they need to research this? What more is there to learn? They have had phenomenal funding for about 20 years now? Its practically cured, not a Death sentence like it once was. Which is great!

Good outlook. LOL
 

Lizzie

Member
Cort, are you not aware that the NIH website is down, and has been down for quite some time, and your links do not work? At least, I have not been able to access it at all for several weeks even though I have gone to that site often in the past several years. I would LOVE to read the blog post by Dr. Francis Collin and Dr. Walter Koroshetz.

Pres. T. has shut down communication of several gov't entities to the public. I assume this is part of his communication shut down...

Do you know any more about this? Would you be able to post the entire blog post to read here?

As always a BIG thanks for all you do!
 

GG

Well-Known Member
Cort, are you not aware that the NIH website is down, and has been down for quite some time, and your links do not work? At least, I have not been able to access it at all for several weeks even though I have gone to that site often in the past several years. I would LOVE to read the blog post by Dr. Francis Collin and Dr. Walter Koroshetz.

Pres. T. has shut down communication of several gov't entities to the public. I assume this is part of his communication shut down...

Do you know any more about this? Would you be able to post the entire blog post to read here?

As always a BIG thanks for all you do!
Don't forget the water he polluted (lead) in Flint, Michigan, the guy is just evil! He is going to replace it with that fluoride crap!

GG
 

Lizzie

Member
Cort, are you not aware that the NIH website is down, and has been down for quite some time, and your links do not work? At least, I have not been able to access it at all for several weeks even though I have gone to that site often in the past several years. I would LOVE to read the blog post by Dr. Francis Collin and Dr. Walter Koroshetz.

Pres. T. has shut down communication of several gov't entities to the public. I assume this is part of his communication shut down...

Do you know any more about this? Would you be able to post the entire blog post to read here?

As always a BIG thanks for all you do!
I posted your link on an ME support group just now and asked who can open the link. So far one person in the UK said they can open the link. (I tried opening with another browser just now. Also tried using my phone, same error message. Very odd.).
 
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Cort

Founder of Health Rising and Phoenix Rising
Staff member
Why you such a negative nancy? "If any diseases get cut at the NIH it's probably going to be those like MECFS or fibromyalgia…"

Seems like HIV could take a big hit, how much more do they need to research this? What more is there to learn? They have had phenomenal funding for about 20 years now? Its practically cured, not a Death sentence like it once was. Which is great!

Good outlook. LOL
Well, it's because we haven't built up the constituency or clout at the NIH that other diseases have and we just got a increase - which to me suggests that it could be shaky relative to other diseases. If we had the increase going for a couple of years I think that would be more secure.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I posted your link on an ME support group just now and asked who can open the link. So far one person in the UK said they can open the link. (I tried opening with another browser just now. Still no luck. But I hope it turns out to be just my computer anyway!).
No I wasn't!
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
A couple people in the US have now said they can see the link. I tried switching to my phone. I still can't see ANYTHING at NIH, and haven't been able to for several weeks. (error messages only, cannot connect to server). But at least it appears to be 'just me', I hope.

thanks
I just pasted it into the bottom of the blog I wrote. :)
 

weyland

Well-Known Member
I attempted to comment on the NIH blog, but it appears they aren't going to approve my comment, so I'll post it here. I guess they didn't appreciate the truth being pointed out.

Words cannot cure disease, only money and action can. After 60+ years with no action, their words are hollow.

August 22nd, 1957: Dr. Alexis Shelokov of NIH NIAID reports in the New England Journal of Medicine of an outbreak of myalgic encephalomyelitis in Washington, D. C. In the intervening 60 years, the NIH has made zero measurable forward progress on understanding or treating this horrible disease.

October 5th, 1996: Dr. Stephen Straus, also of NIAID, deals a deathblow to biomedical ME research at the NIH by embracing the British biopsychosocial model of “chronic fatigue syndrome” and falsely claiming that the disease does not occur in outbreaks and is not caused by enteroviruses. This one man single-handedly set the field back decades. The fact that the NIH post-infectious study makes absolutely no provisions for studying the involvement of enteroviruses in ME patients shows that the NIH and NIAID has learned nothing and is ignorant of the existing evidence. This is extremely disappointing.

It must be acknowledged that the handling of this disease by the NIH to date has been an abject failure. Anything less than hundreds of millions of dollars poured immediately into the extramural research field for ME will be inadequate. You have an enormous debt to repay for all of the years that this field has been inadequately funded.

This is a disease epidemic with no end in sight. It continuously removes very capable, previously healthy individuals permanently from the workforce at the peak of their productive lives. The economic burden of this disease is immense and on par with diseases that receive billions of dollars in funding. You know what you need to do, please do it.
 
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Bill Later

New Member
Don't forget the water he polluted (lead) in Flint, Michigan, the guy is just evil! He is going to replace it with that fluoride crap!

GG

GG, How did Trump put lead into the Flint water supply?

Oh, right. He didn't. Try to stay on topic please...
 

Phil C

Member
Most U.S. congressional politicians seem to see great benefit in doing health research. All of them want to have cures for their own possible cancer, dementia, heart disease or other ills that they feel could befall them or family members, at a minimum. This is not as much of a partisan issue as some other science topics in the U.S. It's true that the Trump administration has proposed draconian cuts to NIH, but this is not the mainstream priority in Congress.

There are exceptions. My own congressperson is a libertarian (Justin Amash [R]) who believes in an extremely small federal footprint. He had not signed the ME/CFS letter as of a week ago. I would be shocked if he signed it by the deadline yesterday. Given his statements and votes on various issues in early 2017, I doubt he will be re-elected in 2018.
 

Phil C

Member
I meant to mention a minute ago that I did send the e-mail to Justin Amash about signing the letter in support of ME/CFS research. I did this even though his statements make it clear he is a lost cause on federal funding for issues that affect the common good. I would urge the ME/CFS advocates on Capitol Hill to not waste their time trying to talk to stone-cold Representative Amash. Many others from both parties would be better targets.
 

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