White House chronicle *A must watch!*

[VillageLife]

http://whchronicle.com/2010/10/talking-about-chronic-fatigue-syndrome/

Guest: Deborah Waroff, author; Dr. Paul Plotz, National Institutes of Health

 

[Sherby]

Hi villagelife , Can we watch in the UK as all i get is a high pitch note and multi coloured screen. Or am i being stupid.

Any idea what I'm doing wrong?

 

[George]

Nothing wrong the video starts at about 37 seconds in.

 

[mojoey]

Sherby, you just have to wait it out. The program starts a ways in.

 

[Sherby]

Thanks guys.

 

[VillageLife]

The article new today........

http://whchronicle.com/2010/10/hearing-from-those-who-suffer-mostly-in-silence/

 

[Mya Symons]

Thank you villagelife, this was such a great video. Llewellyn King and Deborah Waroff make a great team for CFS advocacy. For anyone who has not seen this video, please watch. I wish everyone who does not have this disease would watch this video.

 

[Rrrr]

i have not watched this yet, but i will note that plotz was one of the NIH officials that met with patients on Sept 7, 2010

 

[George]

VillageLife this is a lovely find thanks so much for posting it.

Hey ya Rrrr Dr. Plotz is very sympathetic in the video to the patient's plight. He makes a good patient liaison if the NIH is smart they will continue to use him. He doesn't have any problem with talking about the lack of work in the CFS field which is wonderfully disarming. Course he's very cautious about the XMRV connection right now as well. But really a very sympathetic figure for the NIH to use as a spokes person and liaison to the ME/CFS patient community.

 

[voner]

villagelife: thanks a million!! Misogyny -no kidding.

<<<<<PLEASE SPREAD THIS VIDEO>>>>>>

to quote Llewellyn King:

why haven't THEY been energized before, people are suffering.

it is sad, but true.... medical doc/researchers are trained only use "accepted measures"... but they are also not informed.

i disagree with Dr. Poltz.... researchers will come now -- ONLY IF THE NIH/ETC put up the $$$!!!!

IT MAY BE GETTING CLOSE TO THE TIPPING POINT!!

 

[xrayspex]

voner how do you think the tipping point is working in this case? tipping point for going over the edge in our favor soon or continued obscurity?

 

[pictureofhealth]

It was very revealing, as Dr Plotz points out, that allocation of NIH money for research is led by the number of scientists interested in an illness or pathogen, or the degree of scientific interest generated by particular avenue of research which encourages researcher groups to apply for grants - not the number of desparate patients in need, or the degree of devastation caused by an illness, or the numbers of dead and disabled, or the economic or social, implications of not treating it and ... etc .

In other words, if an illness catches the interest of a scientist group because it is 'fascinating' or 'cool' to study, or 'scientifically sexy', or perhaps because there is a chance for academic prestige or a Nobel - then it stands a chance of getting studied and funded, because more scientists will send in applications for grants.
In other words, no one is serving the interests of patients or the public here.

Well I guess it was obvious really - but it just shows how back to front the system is. Made me furious actually and muttering expletives under my breath which are totally unprintable ...

 

[Mark]

Just fantastic: Llewellyn King comes across as a truly compassionate man who really "gets it". Yet another sign of hope, that we have him on our side.

And indeed a very revealing analysis of why scientists aren't interested in getting involved: NIH insisting that study is driven by scientists' interests, and nobody is interested in studying us - so we can legitimately blame scientists for not caring about us then? - but does nobody have responsibility for encouraging scientists to study us?

And the absence of biomarkers as a key factor putting off scientists. Is that even true? When over 5000 papers now have documented the biological abnormalities, which are clearly measurable? How does this hurdle ever get passed; how do we even get started in a case like this? Surely somebody somewhere has to start the ball rolling by measuring that which can be measured: the very biological indicators that have been so well documented: elevated inflammatory cytokines, abnormal immune markers, greatly increased levels of multiple viruses, abnormal physiological responses to exercise...take your pick guys, measure away! If this is the block, then the task is clear: find us, measure these things, and establish those biomarkers!

It just isn't acceptable that science can't study us because it (apparently) doesn't know anything about us. Just like our political spin: We refuse to hold an investigation because there's no evidence...blah blah Catch-22 blah blah...

Somebody, blow the whistle and start the game, already. I've been waiting 15 years now, and I'm a relative newcomer to the waiting game...

 

[pictureofhealth]

Yes, it seems as if we have been pitching to the 'wrong' people all along, at least not in the most effective direction.

Judging from this comment from Dr Plotz, we need to be pitching directly to (individual) scientists, researchers, and Universities with biomedical research facilities & special interests - plenty of those in the US I imagine.
Governments, even government health protection bodies as funding giants do not seem fundamentally to be the ones deciding what direction research takes (unless its an emergency outbreak I imagine). Their main role seems to be simply to respond with a 'yes' or 'no' to research funding requests (witness Dr Coffin's comments about slow trickle of funding from federal bodies at the 1st XMRV Conference).

(In the UK, the government have just annoyed scientists, including the MRC, by saying that we can no longer afford to fund purely speculative/academic research - although this is just the kind of research that often turns up amazing discoveries which are helpful for medicine and commerce - just the way science used to be done - ie based on science and without interference from politicians - or psychiatrists with interests other than the patient in mind)!

 

[Hope123]

Well, I haven't looked at this video yet but I think we need to continue to pound on our respective governments to continue to focus on the needs of patients.

The researchers who have been interested in CFS in the US (the ones who worked on some of those 5,000) have dropped out or decreased their work on CFS because they were not able to be funded. Hence, you have Gudrun Lange and Nancy Klimas creatively getting funding from US Department of Defense (which gets 50% of US budget overall!) to study Gulf War Illness and sticking in CFS there whenever they can as a "control" groups or other ways.

In addition, the government CAN force scientists to work on a project through funding and other means. An example of this, from the non-health side, is the Manhattan Project, a nationwide effort to build the nuclear bomb in the US in the 1950s; physicists were recruited aggressively to work on this and some were asked to switch the focus of their projects. In the US recently, major centers were created for the study of autism, largely due in part to patient pressure.

 

[Marco]

Hi this is a problem in Britain too and thanks Mark and pictureofhealth for clarifying this problem. I too have wondered why government does not intervene to promote research more. When I enquired about this to someone in the know they told me the same thing, that the govt. was dependant on researchers coming forward with ideas to them. Seems the wrong way round to me. If no researchers are interested or their research projects are not good enough, nothing gets done and the govt just waits. This is another field where the psychiatric lobby have done us so much harm because the disease is perceived as psychological it puts off biomedical researchers from even thinking about it or considering it as a field for them to work in. It is astounding that this situation continues and the govt. adopts such a hands off policy. Common sense would assume that they would encourage research in areas of patient need. If we had a raging epidemic spreading across the country there would be more top down initiative.

Bollocks - pardon my French and no offence to you currer or your friend.

Very few scientists were concerned about anthropogenic global warming until the goverment decided it was a funding priority - allegedly at the behest of Margaret Thatcher who wanted to break the UK's dependence on fossil fuels. Apochryphal or not, once AGW was inserted into the grant programmes the applications flooded in from every discipline.

If govt were to do likewise for ME/CFS oncologists, virologists etc would be beating down the doors and I doubt they would be put off by the 'stigma', reputed lack of biomarkers or the threat of violence from a bunch of tired, deconditioned post-menopausal women.

As for the oft repeated mantra that ME/CFS is a priority, its only a priority in my book once the waffle stops and the action starts. Anything else is merely a smokescreen.

Rant over!

 

[George]

(Big grins) well, I enjoyed the rant Marco It was nicely done. True nuff, that if you fund it 'they will come'. Money drives everything. You put money out there and people from every discipline will become magically interested in ME/CFS. On the other hand the thing that drives the bus when there is no money is prestige that will translate into money. In this case a third human retrovirus. (grins) Lot's of prestige there and the money is being um, "found" at least for now.

 

[Marco]

Agreed George

I was a little blunt and of course researchers will be attracted by what is sexy, new and likely to earn academic kudos.

On the other hand it's an easy get out to claim that researchers just aren't interested or not coming forward.

Funding, especially in the UK where academia is increasingly geared to research publication and bringing in research grants, can easily drive research when the powers that be have the will to do so.

Its becoming a mantra for me but the only real pressure is political pressure.

Minor rant two over.

 

[pictureofhealth]

Well I don't much mind as long as it works out in our favour, and the research gets done (and done properly), regardless of which ever way round we approach it! Perhaps I should rephrase and suggest, based on Dr Plotz's (NIH) comments, that 'a multi pronged approach in several directions at once' might reap additional benefits for us, in achieving our desired outcome .. (she said hopefully).