NIH have gotten Myra McClure, Dentists and Psychs to go to Work on You!

UPDATE: Myra McClure Stepped Down from the "CFS" SEP! We did it!
We still need to get the dentists and psychologists (except for Friedberg) replaced with virologists, retrovirologists, neurologists and immunologists, so please refer to my latest blog post for an easy letter you can send on that score. Again: Yea Us!.

New Post:
http://forums.aboutmecfs.org/entry....Us!-Now-lets-get-some-actual-scientists-on-it!

________________________________________

This is my first blog post ever. So exciting!

As Cort reported, the new composition of the NIH's "CFS" panel is top-heavy with psychologists, dentists and Myra McClures. That's right, NIH has been taking some no-cost steps to appease us, but where the rubber hits the road- the grant making process, it is showing it's true colors once again. This is just NIH's latest move in it's historical war on ME science. More info at CFScentral.com.

I wrote the following letter which I encourage you to cut and paste and send to the following people. I used most of Patricia Carter's letter then added my own objections to McClure's saying things in the press which were unsupported by the science and also a complaint on the over-all make up of the SEP (text authored by Dr. Yes).

How to do this extra-easy advocacy:

1. Copy the following subject line and paste it into the subject field in your email.

Subject Line:
NIH's "CFS" Special Emphasis Panel (ZRG1 CFSH80) membership must be changed!

2. Copy the following text (the letter) into your main field of your email:

email text:
I am writing because of yet more malfeasance by NIH in response to the epidemic of the severe neuro-immune disease ME (aka "CFS").

I am very distressed to see the makeup of the new "CFS" Special Emphasis Panel (ZRG1 CFSH80) grant review committee at NIH. I have two strong objections on which action must be taken:

(1) The many psychologists and dentists on the panel are not sufficiently educated/ qualified in virology or molecular biology (or biomedical CFS research in general) to be evaluating grant proposals on XMRV or related topics outside of their respective fields.

(2) Myra McClure is a (a) biased (b) british citizen

2 (a) (i): Prof. McClure has claimed her studies prove facts which were not shown in the science when commenting to the press to disparage WPI.

2 (a) (ii): She is also a collaborator of well-known anti- ME science charlatan Simon Wessely:

BBC on-line:
news.bbc.co.uk/2/hi/health/8441491.stm

"Professor Myra McClure, one of the Imperial College London investigators, said: "We are confident that our results show there is no link between XMRV and chronic fatigue syndrome, at least in the UK." She said they had used extremely sensitive DNA testing methods, called polymerase chain reaction, to look for the virus.
"If it had been there, we would have found it."
'Disappointing'
Co-author Professor Simon Wessely said the findings did not invalidate all previous research, some of which has shown that CFS can be triggered by other infectious agents, such as Epstein Barr Virus."

Independent Newspaper:
http://www.independent.co.uk/news/sc...e-1859003.html

"One scientist involved in the latest research also criticised the previous study, which was published in the peer-reviewed journal Science, saying it was premature and that the journal should have waited until there was stronger, corroborating evidence of such a link."When you've got such a stunning result you want to be absolutely clear that you are 1,000 per cent right and there are things in that [previous study] I would not have done. I would have waited. I would have stalled a little," said Professor Myra McClure"

2 (a) (iii): Prof. McClure has publicly stated that she has no interest in research in the area of ME ('CFS').

Nothing on Gods Earth could persuade me to do more research on CFS.

Source: sciencemag.org/content/329/5987/18.summary

2 (a) (iv): Prof. McClure, in her only study on "CFS" (December 2009) used the patently invalid "Sharpe 1991" definition of "CFS" (ME) which fraudulently defines "CFS" (ME) as mere Idiopathic Chronic Fatigue (ie chronic fatigue caused by no known medical condition) and not properly as the discrete neuro-immune disease recognized by WHO since 1968. She thus studied random tired people and lied and said she studied people with "CFS" (ME).


2 (b): McClure is not a United States Citizen. Why should a United Kingdom resident be deciding which applicants receive research grants in the United States? In addition to questions of legality which arise from this, there are further questions of expense, since Prof. McClure's travel expenses will, of necessity, be higher than those of a United States resident. Especially in a recession, we should be cutting costs (where appropriate) and stimulating American science and the work of American scientists.


Therefore, I DEMAND:
(1) the committee remove some of the dentists and psychologists who do not have expertise in ME ('CFS'). Prof. Friedberg should not be removed since he has a great amount of experience with ME. They should be replaced by qualified biomedical researchers who have significant experience with ME ('CFS').

(2) Prof. McClure be removed from this committee and that a qualified retrovirologist who is a resident of the United States be appointed instead.

Please respond to this letter with your planned actions on the "CFS" SEP.
Thank you!

Sincerely,

3. Sign the letter at the bottom.

4. Send the letter to the following addresses:

kathleen.sebelius@hhs.gov

francis.collins@nih.gov

dennis.mangan@nih.gov

toni.scarpa@nih.gov

hoshawb@csr.nih.gov

AskDrH@ostp.gov (President Obama's Science Advisor, John Holdren)


Extra Credit:

Go to these contact pages for your members of congress and president and send the email to them:

Find your congressperson at writerep.house.gov/writerep/welcome.shtml

Find your senator at senate.gov (search in top right corner)

http://www.whitehouse.gov/contact/


Congratulations and Thank You! You just saved ME patients from future suffering!

Comments

Yes, you go, Justin!

Very early this morning I emailed Brian Hoshaw asking for an explanation of the Myra McClure appointment.
 
This whole thing has just took the wind out of my sail. I was trolling along and actually thought things would be different from now on, but it is the same old corrupt bureaucracy. It just moved from the CDC to the NIH and they will keep kicking the leg out from under CFS research.

There should not be any foreign people serving on this panel. They are intentionally trying to squash the CFS patient and it will not change

I hope I'm wrong and I'll support this effort 100% as this is great stuff Justin, so please keep it up!!!
 
Shit. (Can I say that here?) This is very depressing. Thank you, Justin, for calling our attention to this and for calling us "to arms". And please keep us posted. (Good blog, by the way ..... :) )
 
Good start Justin - you even provide extra credit! :)

Hoshawb is the one that created the panel - so he is a good person to get a post off to...Of course we want his boss to know how upset we are - I believe, but am not sure, that is Tony Scarpa. Her boss will be Francis Collins and his boss is Kathleen Sibeliusl..hit them all at once!
 
This is the letter I sent - use any parts of it you wish...

Dear Dr. Hoshawb


I must protest your inclusion of Dr. McClure on the CFS SEP panel. Her history with CFS research has been a decidedly turbulent one. Her negative XMRV study showed up just months after the Science paper and was critiqued by many researchers as being an inadequate rush job. Indeed, it took several months for the next paper to appear. Dr. McClure publically said CFS was not associated with XMRV in the UK at the time - a rather wild statement given the limited purview of her paper. Later she said she would never work on CFS research again. Throughout the volatile XMRV debate she has been a very public figure - penning editorials and appearing before the media. Her association with Dr. Wessely has been quite disturbing to many. While researchers such as Dr. Coffin have continued to 'sit on the fence' regarding XMRV she has made it very clear that she believes the finding is spurious.


Now this UK researcher, in the midst of the controversy over XMRV, pops up on the US panel that reviews XMRV/CFS related grants. You can imagine how this appears to the CFS Community! I assume you could have gotten a researcher without the negative connotations but chose not to. There are only a handful of researchers that would have been disturbing and you picked the most disturbing one! It's utterly astonishing to us.


Whatever the reason for the choice it certainly feeds into the idea that the federal government is 'against CFS'. By choosing Dr. McClure you have undermined the legitimacy of the scientific process at the NIH in the minds of the CFS Community...That's not hard to do for a community of 1,000,000 people that receive all of $4,000,000 a year in funding. They need signs of support or at least evenhandedness - not this...
 
August59;bt4163 said:
This whole thing has just took the wind out of my sail. I was trolling along and actually thought things would be different from now on, but it is the same old corrupt bureaucracy. It just moved from the CDC to the NIH and they will keep kicking the leg out from under CFS research.

There should not be any foreign people serving on this panel. They are intentionally trying to squash the CFS patient and it will not change

I hope I'm wrong and I'll support this effort 100% as this is great stuff Justin, so please keep it up!!!
I imagine that Dennis Mangan, who has brought the ME/CFS community into the mix and is trying to change the perception of the NIH as unwelcome and uncaring - is just spitting bricks right now .....This is the last thing he wanted to show up!
 
Thanks for posting this. I don't think "heavy hitters" are going to do anything until someone as "big" as a Senator, VP or Prez. has to resign due to CFS. Then we'll see progress. Sorry, I'm feeling a bit bitter about the lack of interest and specialists in this field. And, the cost and travel expense required to see a CFS specialist.
 
Nico;bt4169 said:
Thanks for posting this. I don't think "heavy hitters" are going to do anything until someone as "big" as a Senator, VP or Prez. has to resign due to CFS. Then we'll see progress. Sorry, I'm feeling a bit bitter about the lack of interest and specialists in this field. And, the cost and travel expense required to see a CFS specialist.
I don't think we're going to see a president or senator resign over ME anytime soon. But, it is true that, if the sordid history of ME is any guide, CDC and NIH will not change until directed to do so by congress, so we can't just send our emails to a couple of people at NIH or CDC. We've been doing this for 25 years. time to send everyone letters esp. congress. If someone has the emails of the membership of the house and senate committees that oversee NIH and CDC, please let me know. Otherwise, I'll look them up eventually. I will go check mcwpa.
 
August59;bt4163 said:
This whole thing has just took the wind out of my sail. I was trolling along and actually thought things would be different from now on, but it is the same old corrupt bureaucracy. It just moved from the CDC to the NIH and they will keep kicking the leg out from under CFS research.

There should not be any foreign people serving on this panel. They are intentionally trying to squash the CFS patient and it will not change

I hope I'm wrong and I'll support this effort 100% as this is great stuff Justin, so please keep it up!!!
NIH has been just, or almost, as bad as CDC this whole time. Stephen Straus at NIH was probably worse than Reeves imo. These changes NIH has made in the last few months are good, but they're reverting to form now with this nonsense. It is very dispiriting, but we are better organized and can have more of an effect by raising our voices. So thanks for sending these out (if you have) and let others know this just takes a couple of minutes.
 
Just as a foot-note to my comment: I posted it whilst feeling tired and very cranky. Probably the best thing to do is hope for the best, and keep hoping for the best. Thanks Justin, for your efforts.
 
SQUEAKY WHEEL GETS THE GREASE!

yeah now that the focus is off them, ie the XMRV media interest has gone away, the rats are coming back out of the woodwork, which is no surprise really, way it always is :/
 
SilverbladeTE;bt4182 said:
SQUEAKY WHEEL GETS THE GREASE!

yeah now that the focus is off them, ie the XMRV media interest has gone away, the rats are coming back out of the woodwork, which is no surprise really, way it always is :/
right, we've got to keep the spotlight on them.
 
OMG! This is the best blog ever! You go, Justin!
LOL! I like your new avatar - can't believe I didn't think of that myself!

I am compiling my own letter for McClueless, as being a Brit I can hardly complain to your NIH about employing a Brit.

And may I just add, this really is the best blog ever conceived.
 
cigana;bt4186 said:
LOL! I like your new avatar - can't believe I didn't think of that myself!

I am compiling my own letter for McClueless, as being a Brit I can hardly complain to your NIH about employing a Brit.

And may I just add, this really is the best blog ever conceived.

Thank you for your kind words. What can I say, some people are just born creative geniuses! ;);)
 
justinreilly;bt4170 said:
I don't think we're going to see a president or senator resign over ME anytime soon. But, it is true that, if the sordid history of ME is any guide, CDC and NIH will not change until directed to do so by congress, so we can't just send our emails to a couple of people at NIH or CDC. We've been doing this for 25 years. time to send everyone letters esp. congress. If someone has the emails of the membership of the house and senate committees that oversee NIH and CDC, please let me know. Otherwise, I'll look them up eventually. I will go check mcwpa.
It took a Congressional directive to get MS changed over from "hysterical paralysis," too.

You cannot generally email someone who is not your own Senator. :( They changed it so it's a web fill-in form and you have to enter a ZIP code in the Senator or Rep's election district.

You can still reach them by fax, by post, or by phone. I assume a staff member reads your mail, but they will not write you back. (If you send a little money to their election campaign, they will send you donation requests and maybe even Christmas cards, but they still won't answer your letters.)
 
According to Jspotila, a senator in the 50s who had a relative with MS was the one who got things changed and moving for MS at HHS. Does anyone know of any politicians or politically connected people who have a relative with ME?
 

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