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Latest ME/CFS & HGRV News and Research / Re: P2P Draft Report on ME/CFS
« Last post by Ess on Today at 03:26:34 AM »
Right --- Robyn, I remember this and the posting on MECFSForums -- that PANDORA -- Lori Chapo Kroger sent in the picture with a severe ME patient -- and a statement to the IOM committee stating that severe ME patients need GET--Graded Exercise Therapy.  How utterly absurd and harmful .  .  .  Agenda; agenda.

Sabotage to the ME patient community.  GET is harmful !!  Our bodies do NOT produce/make energy on demand.

Take a car with NO oil -- you keep running it--it will seize up and STOP completely -- until you add more oil -- without the oil the car cannot physically run. 

ONLY with ME -- HHS & Co. hold us hostage in ME -- they defy bio science all along the way -- hence, there is NO oil / real treatment to fill up our tanks to get our bodies well so that we can have our lives back.

And all things considered in the history of ME/CFS and the continued spread of ME/CFS that HHS is responsible for -- depriving all of us of meaningful, active and productive lives, this is nothing short of horrific abuse and criminality of the worst possible kind -- perpetrated against patients by 'Health and Human Services', et al .  .  .

21st Century Crimes Against Humanity !

Latest ME/CFS & HGRV News and Research / Re: P2P Draft Report on ME/CFS
« Last post by Robyn on Today at 12:55:34 AM »
Here is some more Truth.  This link is from the Pandora facebook page from Jan 2014, in which their leader Lori Chapo Kroger sent the picture in with a severe ME patient being tube fed along with her statement into the IOM committee saying how severe patients need Graded Exercise Therapy. It also shows all the patient comments containing objections regarding the fact she recommend exercise for the severely affected, and objections regarding the Hippa violations she committed for posting this picture. Firstly she promotes the use of GET for this illness. She even sends that recommendation into the IOM in 2014. As a nurse she also should have known better than posting a hippa violation of this patients rights:
Latest ME/CFS & HGRV News and Research / Re: P2P Draft Report on ME/CFS
« Last post by Ess on Yesterday at 07:58:57 PM »
This says it sooooo well,  Nancy Blake  !    8)
Latest ME/CFS & HGRV News and Research / Re: P2P Draft Report on ME/CFS
« Last post by fly on Yesterday at 05:02:55 PM »
Advocacy News and Issues / Re: Are you ready for the rumble?
« Last post by fly on Yesterday at 05:00:59 PM »
Just filling up with my maybe, maybe not HGRV infested urine, now just lining up,  just wait a little until they start yawning!

Oooo not pretty, people are puking everywhere.
Advocacy News and Issues / Re: Canary in a Coal Mine--Questions?
« Last post by fly on Yesterday at 04:55:39 PM »
If they put half as much money and effort into biomedical research as they do into meetings, crowd control and PR, we'd be living life, at least as productively as HIV+ ppl.
Latest ME/CFS & HGRV News and Research / Re: P2P Draft Report on ME/CFS
« Last post by cath on Yesterday at 03:55:34 PM »
Nancy Blake has written a humorous satirical analysis of the NIH P2P Draft Summary on ME/CFS.  I hope you will enjoy this as much as I am.

I love it

I posted something in regards to the "Stakeholder solicitor" a while back.
I think our community needs are reminder since these people seem to rope the patients in!,21301.msg165716.html#msg165716

My post on facebook about this:

Benefits of Stakeholder Engagement
"Everyday we see examples of what happens when companies don’t have a stakeholder engagement strategy: activist groups mobilize thousands of people (through social media) to name, blame, and shame companies. The reputational costs are often immense, since customers are increasingly sensitive towards these issues and demand greener products and supply chains. Companies might also face regulatory risks that often come with high implementation costs."

Stakeholder Engagement doesnt benefit the stakeholders.
Stakeholder Engagement benefits the company, makes the company look better,
is a business strategy, NOT a patient strategy in regards to NIH!

NIH doesn't care what YOU say!


Advocacy News and Issues / Re: Are you ready for the rumble?
« Last post by AnneSpaceCoast on Yesterday at 09:09:00 AM »
Potential targets would definitely be the CDC contingent from the early 1980's, that went to Incline Village, Nevada to interview Drs Peterson & Cheney about the "Incline Village" outbreak. While there, the reps interviewed no patients, and were primarily interested in the good snow skiing.

Rambo Super Soakers!
Advocacy News and Issues / Re: Canary in a Coal Mine--Questions?
« Last post by Ess on Yesterday at 08:33:39 AM »
Exactly--NIH-P2P ignores input from patients/advocates and ME/CFS Experts and Researchers.
They don't give a flying hoo-haw what we have to say -- it makes NO difference because
'the rules and NONsensical parameters' have been set up for 'the pre-determined redefinition'.
This is a one-way show; a rigged game!
TPTB will USE patients that they can manipulate for their purposes--and we are seeing various instances of this.

These 'rules' and 'NONsensical parameters' are NOT about medicine and health and 'First Do No Harm'.
This 'rigged game' is highly political and has NOTHING to do with protecting and preserving patients' health -- N O T H I N G .

I am also completely against the HHS-IOM and NIH-P2P and participation in this farce.

Paris Watson, who is in charge of the P2P program at NIH, instructed the “Communications Team” (page 11) not to reply to questions from the public regarding ME/CFS in order to keep tight control over the agency’s official party line:
If *any* inquiries come in regarding ME/CFS, please forward to me and do not reply.
(my bolding)

This is the mindset @ HHS-NIH-P2P
they are under strict order
to go thru the motions -- of the fraudulent P2P study
get it over with ASAP or sooner
using politics
trumped up NON-sensical rules and parameters
a 'jury model'
MISinformation and the application of this!

NOT science.
HHS is afraid to let out the truth of the BIO science of ME/CFS--they have covered this up for three decades.

This is a story of massive CORRUPTION and it obviously
goes to high levels -- and has been going on for
3 decades.

This is a shameful horror story,
destroying patients' lives and their families,
over and over and over and over again -- as the disease spreads.

And--they--HHS do NOT give a S*it.
It is more important to protect their LIES
than it is to protect human life -- in fact, life of all humans.
THIS is the 'Tip of the Iceberg' with ME/CFS!!
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