Tragic testimony: CDC's handling of HGRV in ME/CFS receives federal applause.

[imawakebutsleeping]

Carol, thank you.x

[Ravepuppyak]

Is it just me who noticed that none of them gave a shit as she spoke? None of them invested in her or her words or her pain. Even when standing up is this still a slow death that the suffers must be seen as faceless nameless victims??

[CarolGeraci]

@Ravepuppyak They allow us to suffer for over 20 years now- they do not care. How they can sleep at night? live with themselves? Earn a living off of us? They are not moral people like you,who is appauled. I expect nothing less of them. I spoke for all of us- for senate hearings later. Those in the room told me told me the room went silent (you could hear a pin drop)- this year they put me on a waiting list! So I am making other plans- I am on FB if you want to connect- Much love- thank you!

[Ravepuppyak]

Is it just me who noticed that none of them gave a shit as she spoke? None of them invested in her or her words or her pain. Even when standing up is this still a slow death that the suffers must be seen as faceless nameless victims??

[Aspiecelia]

The denial by the CDC and NIH has got to have something to do with money. Either a drug company wants them to hold off because they are developing a drug, the insurance companies don't want to pay for our care, or the government thinks Medicare and Medicaid will be overwhelemed. In the United States money is generally the guiding factor.

[wingfingers1]

The US Govt's PNAS paper by Lo & Alter was mentioned at the Zagreb conference and said to have found XMRV in a greater % of samples than the Lombardi paper. This was in press but when the CDC were about to publish their negative study (proved only their inability to find XMRV), Alter was told to modify it to bring it in line with the CDC study. He removed refs to XMRV so that the paper, published 2 months later, only talked about the MLV sequences, while the CDC study was published immediately.

[thx1138mindlock]

@wingfingers1 Very true. Without the 'leaked' paper from Zagreb the Alter/Lo FDA paper would never have gotten published at all (ME/CFS patients would have been none the wiser).Recently we learn the WPI have re-tested the FDA Polytropic (P-MULV) samples and they are also Xenotropic (X-MULV). Meaning Alter's 87% P-MULV were X-MULV too. Meaning the FDA replicated the WPI. Meaning CDC must classify CFS as a infectious disease like HIV or change the name. Either way, silence isn't science.

[justinreilly1]

@wingfingers1 Lo and Alter have never explained why they presented at Zagreb that they had found XMRV in a majority of ME patients but they then changed it to MLVs not including XMRV. It doesn't seem credible that that was a mistake in the conference presentation as these are very sophisticated and careful scientists.

[justinreilly1]

@wingfingers1 Lo and Alter have never explained why they presented at Zagreb that they had found XMRV in a majority of ME patients but they then changed it to MLVs not including XMRV. It doesn't seem credible that that was a mistake in the conference presentation as these are very sophisticated and careful scientists.

[bodieangels]

Other than THANK YOU Carol *Hugs* and Glad I finally was able to hear your Testmony~ Great Job!!!

Please Remember that the gentleman fiddling with his cell slightly.. that this was ONLY his 2nd CFSAC meeting and that HE WAS one of the Gang of Three that went on to DRIVE the Point HOME about how SERIOUS our illness IS.. His was the Phrase.. "I would say between a sinus allergy and death, that they are closer to death." He and Klimas/Jason MADE our case at END of the meeting. Dr Gailen Marshall.

[CarolGeraci]

@bodieangels Thank you&Much love to you! I do not worry nor gave it any thought about the man fiddling with his cell phone. I could sense them. They were indeed nervious & for a few moments had to confront themselves, morals,etc. CFSAC members are puppets to the CDC and have no real power. This is beyond Reeves, Wessely, Strause. I am sure many tried over the years to help. I lost respect for those around 4manyyears who pretend to be helping us. 1 thing 4 them to do. R we Fb Freinds?

[CarolGeraci]

@bodieangels Thank you&Much love to you! I do not worry nor gave it any thought about the man fiddling with his cell phone. I could sense them. They were indeed nervious & for a few moments had to confront themselves, morals,etc. CFSAC members are puppets to the CDC and have no real power. This is beyond Reeves, Wessely, Strause. I am sure many tried over the years to help. I lost respect for those around 4manyyears who pretend to be helping us. 1 thing 4 them to do. R we Fb Freinds?

[riverlaken]

I am so desgusted with the CDC, it is so, so very criminal!!

[riverlaken]

I am so desgusted with the CDC, it is so, so criminal!!

[janeann00]

Did you happen to notice the guy playing with his cell phone while she was speaking? He needs to be called out for that. Very good speech. That took guts. Thank you!

[thx1138mindlock]

@janeann00 Yes I did notice that. A patient reported (who attended) said in the same meeting the FDA drug representative fell asleep! It is a long day, but still. Not very respectful when people are pouring their hearts out in a desperate plea for help. Then again, they've been collectively asleep for 30 years so 'no harm done' in their view.

[CarolGeraci]

@janeann00 Thank you for your kind words. I expect nothing less- they have done nothing for 20+ years- CFSAC members are just puppets for the CDC- they are not and never were patients advocates. How do they sleep at night? Earn a living off of us? They are not moral like you! they see patients in wheelchairs who got better on Ampligen. They know patients are sick with steath pathogens. I care about patients - United in Truth we must be. The unseen will be seen. I am on FB, Thank you!

[nigedog101]

Thank's so much Carol for doing this for us. I know how hard it was for you and how you are suffering now because you've used up all your energy to get this done.

I am honored to have you as my friend! You are so special!

[thx1138mindlock]

Yes. Well done Carol. Yet another powerful and informed woman who is accused of being weak and hopeless by the CDC. It wouldn't surprise me that the women accusation is simply sexist BS dreamed up to marginalise those with the disease.Ultimately, these corrupt officials are simplyuniversity graduates. Nothing more. Yet with time and enough influence these average people become meglomaniacs and adore abusing vulnerable people, as it turns them on. Look how the FDA Ampligen denialist squirmed.

[Bluebottle83]

A heartbreaking and hard hitting testimony - many thanks to Carol

[CarolGeraci]

@Bluebottle83 Thank you for your warm words- Much love. This is a cover up on a massive scale. Not about money in my view- experiments with stealth pathogens- just my humble belief.

[CarolGeraci]

@Bluebottle83 Thank you for your warm words- Much love. This is a cover up on a massive scale. Not about money in my view- experiments with stealth pathogens- just my humble belief.