NIH Director's Blog Post About ME/CFS

[Never Give Up]

Francis Collins and Walter Koroshetz have coauthored a blog post on the about ME/CFS.

https://directorsblog.nih.gov/2017/03/21/moving-toward-answers-in-mecfs/

They hit a lot of the right buttons.

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].

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 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.

They go on to detail what the NIH has been doing recently and what is coming up. They finish with this:

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.

Sounds good to me!

 

[Marco]

Great stuff!

 

[A.B.]

Please leave comments! Even if it's just appreciation for them acknowleding the problem.

 

[JamBob]

Sounds good - just wish they'd give money to Ron Davis so he can get on with his research.

 

[Nielk]

What they leave out is that it is HHS/NIH/CDC's fault that we are in this pitiful state over 30 years after Lake Tahoe outbreak.

It is CDC who created faulty criteria and spreads lies and misinformation. It is NIH who has withheld and is continuing to withhold proper funding.

The steps they are proud to show in this log is pathetic.

What we need is adoption of proper criteria like the ICC and hundreds of thousands of dollars in yearly funding in order to enable the much needed grand scale studies.

We should not be satisfied with these crumbs.

 

[Mary]

I just left a comment; they ask for your name and e-mail address which I provided, but it looks like they post your full name, so it probably would have been better to just use the my first name. Oh well.

And I did put in a plug for Ron Davis and OMF - my comment is "awaiting moderation", hopefully they will post it. Thanks so much @Never Give Up for posting this!

 

[Aroa]

Good News !!!

Now I hope.... they will fund the right people.

It is paradoxical that patients decisions on donations has little to do with NIH grant decisions.

Patients give their money to whom they think they will most propably find effective treatments.

 

[A.B.]

I hope that Lipkin and Davis can get funding for their big projects.

 

[Barry53]

I just left a comment; they ask for your name and e-mail address which I provided, but it looks like they post your full name, so it probably would have been better to just use the my first name. Oh well.

And I did put in a plug for Ron Davis and OMF - my comment is "awaiting moderation", hopefully they will post it. Thanks so much @Never Give Up for posting this!

When I posted it preloaded my full name, which I then edited.

 

[Alvin2]

What they leave out is that it is HHS/NIH/CDC's fault that we are in this pitiful state over 30 years after Lake Tahoe outbreak.

It is CDC who created faulty criteria and spreads lies and misinformation. It is NIH who has withheld and is continuing to withhold proper funding.

The steps they are proud to show in this log is pathetic.

What we need is adoption of proper criteria like the ICC and hundreds of thousands of dollars in yearly funding in order to enable the much needed grand scale studies.

We should not be satisfied with these crumbs.

Exactly, too little too late
They acknowledge reality after decades of denying it, till the point that they will be be unable to spend any money because of the denier in chief in charge.

 

[Esther12]

This has to be a positive sign. Some more criticism of what's come before would certainly be appreciated though.

 

[Forbin]

I like Francis Collins a lot and it is heartening to read of his continuing commitment to ME/cfs research. Still, I'm coming up on my 35th anniversary of post-infectious sudden onset, and all that wasted time makes nothing so clear as the fact that we need to now be vigilant about holding the NIH to its commitment to research and solve the biological complexities of ME/cfs.

Доверяй, но проверяй
("Trust, but verify")

​

 

[adreno]

A good way for the NIH to say we're sorry, we messed up would be to fund Lipkin and Davis in full NOW.

 

[Kati]

A good way for the NIH to say we're sorry, we messed up would be to fund Lipkin and Davis in full NOW.

I wonder if the NIH director is at liberty to fund anything at all these days considering the new administration.

 

[Alvin2]

I wonder if the NIH director is at liberty to fund anything at all these days considering the new administration.

Thats the point, they admit reality after the ship has sailed, they refused to fund ME/CFS research for decades even misappropriating money that was allocated then admit its real after they can't fund it. It could even be intentional.

 

[Snow Leopard]

Yes they should have increased funding long ago, but it also suggests there has finally been a change in attitude - the scientific consensus does not suggest that psychological research and treatments are the answer.

 

[A.B.]

PACE has been exposed as fraud just at the right time as well.

 

[Barry53]

Exactly, too little too late
They acknowledge reality after decades of denying it, till the point that they will be be unable to spend any money because of the denier in chief in charge.

Still a good sign I suspect. Probably going to start seeing all manner of people and organisations back peddling into backside-covering mode, with varying degrees of success, deserved or otherwise. But it usually means they suddenly start deserting the ones who clearly have no chance of dissociating themselves from the nasty smell - in this case the PACE authors.

 

[Nielk]

Check out the link provided for Medline Plus at the bottom of the blog.

Links:

Chronic Fatigue Syndrome (Medline Plus, National Library of Medicine/NIH)

 

[lilpink]

Check out the link provided for Medline Plus at the bottom of the blog.

Grim. I'm not going to waste the energy it takes getting excited until it's worth wasting that energy to get excited.