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

Article: CFS NIH Grant Panel (SEP) Feb 2010

You can view the page at http://forums.aboutmecfs.org/content.php?356-CFS-NIH-Grant-Panel-(SEP)-Feb-2010

 

Basically we need serious lobbyists, which takes money and political muscle.
Have no idea from here how to make that happen.
Only groups with big lobby power seem to get any attention/action.

 

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.

The CDC misallocated funds were paid back to the CFS program under Congressional oversight in the early 2000s.

Just in time for to develop the Emperic defintion and study "CFS" patients who aren't. We should have said "keep the money".
\

 

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

Cort,

I've got to disagree. I think Mangen needs to hear from us, ALL of us. He's in the position to say "Look, I've gotten 500 emails about this and I agree" rather than just delete them like all the rest of the chumps at the NIH. He can at least stuff them in a folder, count them and be our voice. That's what he's there for right? If that's too much to ask he's the wrong man for the job. This communication isn't supposed to happen one way via a as-yet-to-be-delivered website is it?

Mangen's email is:
dennis.mangan@nih.hhs.gov

 

Basically we need serious lobbyists, which takes money and political muscle.
Have no idea from here how to make that happen.
Only groups with big lobby power seem to get any attention/action.

I agree. We need to try to get there.

 

Other type of letter campaign

Yesterday i wrote that i feel like writing might not help as much as we would like. Then in the evening i had another idea, how to do it. Was this ever tried and what do you think?

First, certainly the number is important. So we should aim for 50'000 or 100'000 letters. It will be hard to achieve, but i think only then can it have the impact we wish it would have. It must deliver the true picture of how many we are, the scale of the problem.

Then, we would not send emails, faxes or letters by mail, we would pack them all into bags and physically go deliver them. 50 or 100 or whatever the number of bags will be and make a big pile of letters in front of the entrance of the building where the recipient works.
In advance we would inform the media so they would be there and film, photograph etc.
It would be delivered by people with ME/CFS and probably since media would be there, it would be a great occasion to get some points across, in the coverage about the event.

A good idea?

 

I wonder if people like McClure have any consience whatsoever. She is a purveyor of bullshit and has been inserted to stymie any real research into XMRV and CFS. Makes you wonder what she is trying to put a stop to and why. Is it just the greed of multinational health insurers or something more evil. Could XMRV have been introduced via vaccinations. That question has been asked on this forum. We have no idea but the appointment of McClure is a tragedy for many of us.

Other plants into the CFS community like Simon Wesley who have been instrumental in shutting down research into cfs and creating unbearable postions for severely affected patients who run out of resources, who have no help etc due to their influence are guilty of forcing those severly affected people to suicide. How would it be to have severe cfs and be homeless and how many uncounted patients have killed themselves due to this.

Righ now I have a llittle money but no help. The only thing to help recently has been DHEA which has been an absolute godsend against the incredible pain I was in that kept me bedridden in agony. I take between 50 and 150 mg per day depending on the severity. I have tries the Apha- Keto DHEA which is supposedly has less side effects but it didn't help nearly as much with pain.

I n my case I find that If I take a high dose I often dont need any the next day but need to go on a maintenance dose of between 50 - 100 mg the following day. I split 100 mg capsules into 3 with one dose of 50 mg in the moring then the other 2 doses of 25 mg. If pain is severe I keep the individual doses to 50 mg and may take up to 3 per day. This high dose of 150mg has only been neccessary once or twice when I got very severe symptoms. Its pretty cool that it can counter a relapse of this magnitude.

If this stops working I dont know where I will be. And once my money runs out the sickness benefit is not enough for me to get decent accomodation. I might get a state house(waiting liost 10000) but those areas are pretty scary to live in. I might get a flat in a bad area and have to listen to the neigbours all day while i lie there in agony. The state howsing areas and cheaper housing areas all have noisy dogs which often bark all day and much of the night so your life is really a living hell if you are in pain and cant escape. So I really dont see much hope when the money runs out unless I somehow get well enough to work.

So thanks to these guiding lights of the Psych CFS community the mediacal profession here don't even want me as a patient. After 35 years of trying as hard as I could to be independant and being treated like crap I have really lost any real will to keep trying. I live to try and reduce the pain Im in. I can only eat meat milk, egss and at the moment a little cheeze. I can only drink tea and water. Other teas increase my musclen pain. Most supplements go in the bin after causing further relapses. But once the money runs out I cant keep trying new things becuase the system wont pay. I wont be able to afford the wierd diet that keeps me barely on my feet so In can get to the supermarket.

So I will be another victim of these pscyhos who have perpetuated so many cfs sufferers to commit suicide. HonestlyI don't think I could do it but I do pray every night that I wont wake up in the morning. It would be a mercy to die in my sleep but it would be better to get help and support without all the angst of people implying that you are bullshitting them. So even when help is available i dont seek it becuase there is always suspican that you are lying about your illness. You always have to explain youself over and over. The dirty looks from carers as they think you are bludging. If I had any hope of the support that other sick people in the community get then I would feel differently but thanks to people like Wesley I don't. I was such a mess recently I didn't bother to reapply for my benefit as I cannot handle the derision and viscousness Ive had from doctors and our New Zealand social welfare workers who have refused to help me and treated me like crap so my demise will be even faster. You can handle that sort of thing when you have kind caring support but i don't have anyone at all. I find now that the idea of going to the doctor makes me dissolve into tears and shaking. The same for the idea of approaching income support. If I had a single friend to talk to it may not seem so onerous but am completely without support and fear support because it allways comes with the poison of disbelief and derision thanks to the likes of Simon Wesley. The disease is hard enough to deal with without all that crap.

These evil psycologists who drive patients to despair and suicide must not believe in GOD or they would worry about what lies in store for them in a possible after life. That they might be ordered to pay for the many cfs patients whos lives were driven to an end through their evil.

So MS Mclure you are an evil bitch and I hold you personally responsible for helping destroy cfs patients lives. My only sympathy for is is that in the video I have seen you in you look demented. You look like my mother who was mentally unwell. So its possible I should pity you I don't really know.

And Wesley thanks to your recomendation that there be no research into my illness I have held on in conditons that have kept me alone in agony every christmas and birthday for the last 35 years. Thanks. You will pay you evil asshole.

I have come to regard this world as a mental assylum. That thte only way I can justify the killing the cruelty the starvation as we all watch. etc.

People llike Wesley should have been jailed years ago but never will be in this lifetime because the elites who rule this world are hell bent on population reduction and the elimination of the sick is on their agenda.
They are the Rockefellers who before the second world war had instutions devoted to Eugenics. Hitler got his ideas on a master race from them. The Bank of international settlements that produces the regulation for all the worlds banks funded the Nazis and despite efforts to shut them down after WW2 they have been pushed as issuers of a new global currency and have continued in the name of population control through contraception etc. That is a good method of controlling populations but the elites want population reduction.

I will leave judement to god if there is one. But Wesley should be very afraid of what awaits him in any possible after life if there is any form of judgement. He's chalked up a very big tally in the continued suffering of others at his recomendation. The elites and international bankers who bring nothing but misery to the world have a rapsheet so long that if eternal damnation exists we will all know where they are in the next dimension.


David Rockefeller on Population Control

<iframe title="YouTube video player" width="425" height="349" src="http://www.youtube.com/embed/ClqUcScwnn8?rel=0" frameborder="0" allowfullscreen></iframe>

Hope this video inserts OK.

 

I would be very worried about those body scanners they are inserting at airports around the world. No one is even talking about danger from radiation. Are they being used to sterilize people? Are they being used to deliver a dose of radiation that might give a percentage of people cancer and therefore reduce human lifespans and population.
If people refuse to use them and boycot airports and destinations that use them it will hit the rich in the pocket with reduced earning from tourism and we might get rid of them.

 

I would be very worried about those body scanners they are inserting at airports around the world. No one is even talking about danger from radiation. Are they being used to sterilize people? Are they being used to deliver a dose of radiation that might give a percentage of people cancer and therefore reduce human lifespans and population.
If people refuse to use them and boycot airports and destinations that use them it will hit the rich in the pocket with reduced earning from tourism and we might get rid of them.

Good luck on that one...they are already deploying huge mobile units* for use at stadiums and large events, and smaller ones for bus stations.
The main supplier of the backscatter machines (former head of TSA) has also stated the desire to deploy them at train and subway stations. There are also mobile units driving down the streets of certain cities doing backscatter xrays on vehicles.

*these are even more awful, as you sit in the scanner for extended periods whilst a concurrent program runs "behavioural" analysis software and an officer asks you questions like "Do you pan to bring an explosive device into this event?" So based on the behavioural analysis of the computer and the officer's observations, you could be held simply on perceived "intent" to commit some unidentified crime. There are promotional videos available on youtube from HSA describing the glories of this heinous technology:
http://www.youtube.com/watch?v=o7A-53dCWcE

 

"they are already deploying huge mobile units* for use at stadiums and large events, and smaller ones for bus stations."

Thanks for that Leela. Boycot the events, boycot the bus stations if you can. It does seem a bit futile unless we can get the whole population to protest. That might swing the situation now. Further down the track will be too late.

 

Hey Gert, aren't there any CFS groups in your area? There you might find some people in a similar situation and some support.

 

These evil psycologists who drive patients to despair and suicide must not believe in GOD or they would worry about what lies in store for them in a possible after life. That they might be ordered to pay for the many cfs patients whos lives were driven to an end through their evil.

Wouldn't it be GREAT if governmental and corporate people actually had to be personally accountable for the effects of the decisions/policies they impose? I would like to see how different these policies and practices would be if that were the case!!

 

Hey Gert, aren't there any CFS groups in your area? There you might find some people in a similar situation and some support.

Thanks for the suggestion. When I was 19 I was desperate for some help and support and went to one of these groups. I was quickly told we didn't discuss our personal tradgedies because it was too negative. I have since been back a couple of times and called people in the societies but never got any offer of help. Everyones in the same boat and either have families or their own homes. Most people who make it to the meetings have a support network and are not offereing any help because they can't.
I tend to end up helping everyone else which was always the case with my family when mum was alive. She would come to vist when I was very ill and i would pull myself out of bed and tidy up then I had to cater to her. one day she turned up when I was too ill to tidy up and it was pretty clear she just wanted to leave. Other times she was just annoyed I was too ill to take her out and about. She would just use the flat as a base and basically not really bother with me.
Most of the time after she left I would be bedridden for months from the exertion of tending to her. So I'm pretty wary of associations as most people have no idea how ill I am even those who are ill themselves.
I have had them tell me that they are much sicker than me and I don't know if thats correct but even other patients make judgements. I don't have the strength for all that. I'm just not bothering with avenues I've already explored that havent lead to any help or benefit and just drained me. We are all in that boat where we cannot really help others. We need the same help other sick folk get from the health services.

 

Yup

Wouldn't it be GREAT if governmental and corporate people actually had to be personally accountable for the effects of the decisions/policies they impose? I would like to see how different these policies and practices would be if that were the case!!

Yup. Jail for Wesley and that is being merciful. McClure would be minding her manners and leaving us alone if their were enforcable penalties for destroying people's lives.

 

Yup

Wouldn't it be GREAT if governmental and corporate people actually had to be personally accountable for the effects of the decisions/policies they impose? I would like to see how different these policies and practices would be if that were the case!!

Yup. Jail for Wesley and that is being merciful. McClure would be minding her manners and leaving us alone if there were enforcable penalties for destroying people's lives.

 

I would be very worried about those body scanners they are inserting at airports around the world. No one is even talking about danger from radiation. Are they being used to sterilize people? Are they being used to deliver a dose of radiation that might give a percentage of people cancer and therefore reduce human lifespans and population.
If people refuse to use them and boycot airports and destinations that use them it will hit the rich in the pocket with reduced earning from tourism and we might get rid of them.

Sorry, that is just absurd. How did such a legitimate concern for our community turn into this trash, ridiculuous conspiracy theory? The point is that people suffering from CFS right now are being neglected by the appointment of this panel. Why go off on this crazy conspiracy stuff when the established truth is bad enough?

 

Sorry, that is just absurd. How did such a legitimate concern for our community turn into this trash, ridiculuous conspiracy theory? The point is that people suffering from CFS right now are being neglected by the appointment of this panel. Why go off on this crazy conspiracy stuff when the established truth is bad enough?

Yes, pine, that material is off-topic. However it is not entirely 'trash conspiracy theory". While I personally would not ponder eugenics as a motivation (as Gert did above), the established truth is that these machines are being deployed as we speak, all over the US. The link I posted is PR from Homeland security. I take these machines, and Smart Meters, as threats to my health (as well as other rights) and I do believe they fit into the discussion (though not that of this thread) of the puzzle pieces of our illness.

Electrosmog and the exponential increase in EMF are quite likely to be adding to our illness (EMF makes mold/fungus proliferate rapidly for example) and overexposure to radiation damages DNA. IMO we don't need extra unnecessary toxic crap added to our toxic burden, thank you.

 

The CDC misallocated funds were paid back to the CFS program under Congressional oversight in the early 2000s.

they were... and mostly misallocated again: repetitively studying incidence, again used for other things, studying personality traits with no controls and other psychosocial balgonia, and generally (with a few exceptions) doing anything BUT trying to find any serious or unique biomedical pathology, a unifying cause, or useful treatment

 

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?

Good question, Eric. However...

CAA's position is that THE main biological finding is HPA axis stuff (from their "write your congressman" letters--I would never in a million years tell my elected representatives this). I'm sorry, but that is not a serious position on ME/CFS (nor yet CFS). They seem to be rather ignoring ion channels, immune dysregulation, NK cells, and the like. Until they separate themselves from what appears to me to be limiting themselves to CDC-sanctioned findings, they cannot effectively advocate for us.

Atlhough I'm reasonably sure CAA could recognize bad faith members who should be removed, I have some doubts whether they would be able to effectively suggest scientists to replace them.

I suggest we look to IACFS/ME or MESA for this.

 

Basically we need serious lobbyists, which takes money and political muscle.
Have no idea from here how to make that happen.
Only groups with big lobby power seem to get any attention/action.

yes, that's what we need

 

Then, we would not send emails, faxes or letters by mail, we would pack them all into bags and physically go deliver them. 50 or 100 or whatever the number of bags will be and make a big pile of letters in front of the entrance of the building where the recipient works.
In advance we would inform the media so they would be there and film, photograph etc.
It would be delivered by people with ME/CFS and probably since media would be there, it would be a great occasion to get some points across, in the coverage about the event.

A good idea?

yes, a very good idea! We need someone in D.C. to collect the mail.