• 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, 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.

Article: Stars Not Aligning Any More: CFS NIH Grant Panel (SEP) Reverts, McClure on Board

Cort
I can only think free at last that it's a message to the WPI - kind of a screw you! On the other hand I do leave the option open of Hoshaw not knowing what a controversial figure she is in the patient community (maybe?????). But to bring this person all the way over from the UK......is just jaw dropping. There's gotta be a lot more retro's in the US than the UK...and we had Ruscetti in there last time...I hope they respond to this.
 
M
there is some good in it

Hi folks. It's horrible news for sure. They are up to the same old tricks.

However, I think there is a positive side as well. The positive side is they are being so bold by putting this non-us citizen Mcclure with such an outspoken attitude on the panel. It shows the level of corruption and exactly where the corruption is. This Mcclure lady, she is probably from the UK right? Just like Stowe. Has anybody seen the movie, "special relationship" about Tony Blair and Bill Clinton? It's about the how the governments have been working together.

It is obvious this is a scam between the US and UK. Epecially since many of those negative studies seem to be coming from the UK, five at a time.

They are telegraphing their exact intentions. So there is no guessing what their intentions are, they are up to the same old stuff. It is also good their actions are transparent to everyone here so nobody is being fooled and we can't act like we didn;t know we were getting steam rolled.

We can now openly, realistically, and creativily focus and address the situation.

Everybody is waking up. Look at Egypt. Perfect example of how the internet has allowed people to see what is really going on. We are not alone, everybody is realizing how governments have been executing one big scam on citizens around the world.

It is up to the community to figure out how to overthrow these goons. Might have to go Egyptian on the panel before anything really gets done.
 
R
Otis said:
McClure...said the following "Nothing on God's Earth could persuade me to do more research on CFS"
Click to expand...

I try not to wrap my head around the politics of this too much because nothing good comes of it (for me anyway). But this is bafflingly absurd.

This woman has a Wicked Witch of The West grin on her face every time she discusses the topic, made the damning comment above, floats a wacky contamination theory with no other purpose than to halt the scientific process, has an ax to grind the size of Texas...and is now rewarded with the power to decide our fate.

HOW...THE...HELL. Really, HOW THE FRIGGIN' HELL.

(I also get the sense she might be getting her rocks off by reading these comments- and nodding with that trademark false empathy).

This is a joke.
 
free at last
I think Hoshaw would have to be living on mars, Not to know about Mrs RUMOUR VIRUS Cort, her video presentations, and even the discussion between her and Judy at the NIH conference must be known by Hoshaw. Does He want to help the wpi, or the status quo of the psycology camp ?. i cant even imagine someone wouldnt have said to Hoshaw about these issues just to make sure he was aware of them. first stoye being allowed to be the negative british balance, and now Mclure. more worringly in a position of american decision making power on CFS and xmrv, and even the WPI. It almost appears as if someone in high places wants a british influence in this american drama, that threatens the british position on ME/CFS so badly. something stinks here, i dont buy its a innocent mistake Cort. Hopefully some researchers will also protest
 
T
As a person without a facebook account, who can I email, or fax, and what can I say? This is ghastly. Everytime we think we're making friends in high places, they turn on us once again. Why?

I think we need ANOTHER "What have you done for ME lately?" kind of campaign, take advantage of Faxorama......

Just tell me who to fax and maybe a short succinct statement. I want to do my part......but I'm not sure what to say.

SOMEONE NEEDS TO EXPLAIN TO THE PATIENT COMMUNITY THEIR "WISDOM" IN APPOINTING MCCLURE, A RESEARCHER WITH BIAS AGAINST ME/CFS, NO INTEREST IN FURTHER ME/CFS RESEARCH, AND NOT EVEN A CITIZEN OF THE UNITED STATES!IT ISN'T JUST HARFMUL.....IT MAKES NO SENSE!! EXPLAIN YOURSELVES, NOW.

The way ME/CFS patients in the UK have been treated, or should I say NOT treated, DENIED any treatment, makes me sick to my stomach........so the NIH decides to import one of these "scientists" to that states? NO THANKS.....don't NEED her.....don't WANT her......BYE!
And I'll sure they'll fly her first class back and forth!!! What's that, like $5,000+ a trip?

WE NEED TO SUPPORT WPI NOW MORE THAN EVER.THE WPI, AND THE HANDFUL OF REAL DEDICATED ME/CFS DOCTORS, ARE OUR ONLY HOPE RIGHT NOW. SUPPORT THEM ANY WAY YOU CAN.
 
E
The stars are never aligned for this panel it's more llike stacking the deck. Although Ruscetti and Hanson were the only retrovirologists on the panel last time, they were never able to even look at the grants for anyone they collaborated with. They were the only ones qualified to read retrovirology grants. Could a dentist or psychologist know what is in the grant to approve them? They thought that would fool the patients. Well not all of them. Now they put Myra McClure and yes she's a retovirologists but from the UK and she hates CFS patients. Sounds like a conflict of interest to me. But then again we should not even be in a CFS SEP panel. We should be under the NIAID and out from under these ridiculous SEP panels. Yes could we please get a dentist over here to review this retroviral grant please? Or are there any psychologists out there that can decifer this grant? Give me a break these panels are set up to fail, and Myra McClure is just a slap in our faces.
 
justinreilly
Here is the letter I sent. 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). Please, as always feel free to us the whole or any part of this letter unattributed. Letter edited so that it is ready to just cut and paste into your email text field as a complete letter. Remember to sign at the bottom.

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

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 (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,
Click to expand...
 
M
I hope some people contact other organizations. I don;t think it dose much good to email the corrupt people telling them they are corrupt. Outside force needs to be put on these boards through news media or protests or something.
 
E
Just so patients know the argument they will give is that it is not out of the ordinary to have a non-US researchers on the panel. Someone from Canada was on the last one. However they could have gotten someone that is not biased against XMRV and ME/CFS patients. She has cleary stated she wants nothing to do with ME/CFS. She is using the old we don't want patients taking antiretrovirals as her excuse to stay in it and most likely help bury the association into ME/CFS. Why doesn't she go help to review XMRV in prostate cancer grants then? Leave us alone Myra, we don't want you involved in our illness.
 
leaves
It is inconceivable to me that they have asked her, a person so paternalistic and unrespectful of patients, and a person that is outright hostile to the only ME research institute that we have (WPI).
 
Cort
Here are some emails. I would not email Dennis.....I imagine that he's almost as upset as we are. Here he is trying to bring the community in, trying to be very transparent, trying to show that the NIH is on our side - and they do this. This throws the conversation back to 'the NIH sucks and and can't be trusted" - precisely what he's trying to alter! Hoshawb is one that put the panel together but we need to get in touch with his boss which I thing is Toni Scarpa.

kathleen.sebelius@hhs.gov

francis.collins@nih.gov

toni.scarpa@nih.gov

hoshawb@csr.nih.gov
 
K
Does ANYONE have a link to the video that McMlure gaave ina seminar in teh UK? I HAVE to find it. In it she states that teh WPI doesnt even exist, and that the photos coming form the WPI websire on the building of the center were fake. I want to include that in teh email.

It's so inflamatory and she sounds like an idiot (more than usual).

I will try and find it, but if you all can, lets get this link in the email.

sorry, i know i am spamming this comment, but it's really important. in the video, she was such an idiot about the non-existence of teh WPI.
 
L
One thing we might remember is these are huge agencies, with many employees dealing with a vast array of health issues.
It is unlikely the majority of people involved in the various sections, committees, panels, etc have ever witnessed any of McClure's bad behaviours.

If they did not attend those meetings, can you imagine them watching the videos or reading the transcripts? Especially for our "black sheep" disease? I sincerely doubt it.

I believe that simply pointing out these statements and biases may be useful (if anyone besides the PA reads our emails) because they may actually not even know. I think there is a HUGE administrative disconnect in agencies as enormous (and governmental, which equals disorganised) as these.

Just a thought.

One thing that comes up for me in all this: Whatever happened to all that misallocated funding that Reeves was hung out to dry for? Shouldn't that be reallocated like yesterday?
 
E
I don't want to discourage people, it certainly won't hurt to write emails, faxes etc. but do you think this will be enough? If it was, we would be much better off since many years ago, probably.

In the end, a vote in parliament, the instruction of a person in the executive branch to someone below him or a court's ruling are binding, a letter by a citizen is not.
Unfortunately we are not in these positions. But i believe we must be as "official" as possible, which to me means we need strong oganizations with as big a budget and as many members as possible who forcefully fight four our interests. I don't think the people in those institutions listen to individual citizens.

In the USA the CFIDS Association is the biggest organization. I'm sorry for having to bother them here again, but what are you doing?
Are you aware of those crucial events like the composition of those committees in advance and do you try to make sure it will happen in an as good way for us, as possible? If so, what do you do?
I realize this is very difficult and especially for people who are ill themselves it's a monstrous task. But nevertheless we have to succeed. So what do you say? Can you do these things for us? What can we as patients do for you to enable you to accomplish this mission for us?

In my opinion you (the CAA) need to establish as many contacts to politicians and people in the executive branch as possible. If they can't be convinced to do the right things for us, then the only thing that might help is putting 10'000 people in front of their building. And not go home until they finally help us and stop doing this kind of crap. This would finally also put us in the main evening news and the eyes of every citizen. I realize it's hard for sick people and could only be done in Summer, but if organized well (transport, places to sleep, tents, food etc.) i believe it could be done.

Another example is the upcoming possible changes in the ICD-10. Letters are not strong enough. I don't trust they can fix things for us. Of course, as long as we don't have anyhting better, it's good to write them, but we need to get stronger. How to do it?
 
You must log in or register to reply here.