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We need a way to treat patients.

 Take Action

 

 

 

Patients Needed:              

PART 1: Instructions to Take Action 

To All ME/CFS –S.E.I.D. Patients, Family and Friends,

As most patients know the IOM and NIH P2P have released some positive findings in our disease. While there is debate re: the new name S.E.I.D., there is no debate at all that we  need treatments.


 

Patients must stand together:

 

 

{From the recent Hornig et. al. study. “If replicated in longitudinal studies, these data may provide a basis for early immuno-modulatory intervention to prevent long-term, recalcitrant illness”.  In fact we already have an immuno-modulatory drug that’s proven to help with ME/CFS: it’s called Ampligen }


 

The FDA admitted prior to and during the Advisory Committee meeting for the approval of Ampligen, that they did not fully understand this disease. They have agreed that it is a serious disease – but they’re not treating it like one.

Consider:

(1) that the FDA Advisory Committee Voted 8 to 5, that Ampligen is safe for this patient population.

(2) that the FDA has stated it has no safety concerns regarding Ampligen.

(3) that the FDA has stated ME/CFS is a serious disease and that ME/CFS patients urgently need treatment options

(4) that two recent federally funded IOM and P2P reports underscore the immense need for treatment options for the million Americans with this disease.

(5) The FDA has done nothing to alleviate the suffering of people with ME/CFS…but it could

It’s clear that Ampligen presents minimal risks and large potential rewards for a large, drastically underserved community. The recent IOM Report from the National Academy of Sciences and the NIH’s P2P findings gives us  our best opportunity yet to push for FDA approval of Ampligen.

That‘s why we are asking patients, family and friends to email the below request to those our representatives in Washington D.C. and at the Department of Health and Human Services (DHHS).

This is step one of many to finally get a treatment approved for ME/CFS. With approval will come insurance coverage for all, and more treatments as other companies see the potential for profits.

(There is a template Email below to follow if needed and you can copy and paste for ease). Again it is only a template or a guide, use your own voice and “Let Your Voice Be Heard”

Please send in your email ASAP.

Thank you for Taking Action for Yourself and “Those Unable” to do so.

Kindly,

The FDA Action Team

Some may need

Some may need to Cut and Paste from the PDF Icon below at the bottom of the page next to the Print Icon, if you have any difficulties.


 Part 2: Please cut and paste the below addresses into your email T0 Box:

monica.volante@mail.house.gov; sarah.curtis@mail.house.gov; Elizabeth.brown@mail.house.gov;  dennis.sills@mail.house.gov;  mark.ratner@mail.house.gov;  james.paluskiewicz@mail.house.gov; scott.dziengelski@mail.house.gov; thomas.power@mail.house.gov ; janet.woodcock@fda.hhs.gov; Nancy.Lee@hhs.gov


 

(Emails are for staff of Congress members & Dr. Woodcock of FDA, Dr. Lee at HHS.)

Listen to the experts and patients.



 Cut & Paste into SUBJECT LINE:  Hearing Request for Treatment Denial 

 

Cut & Paste Below into EMAIL MESSAGE:

To: The Honorable Congressman Joseph Pitts Chairman, Energy and Commerce, Subcommittee on Health
To: Representatives Reid, Kennedy, Castor, Butterfield, Upton, Burgess, Murphy, Bilirakis
Cc: Janet Woodcock, Director, Center for Drug Evaluation and Research, Nancy Lee HHS

REQUEST: A Hearing/Adjudication to Examine the Failure to Provide Treatment that has the potential to positively impact 40% of the population living with ME/CFS.

You may have recently seen the report issued by the Institute of Medicine (Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness, 2015) which stated that Chronic Fatigue Syndrome is a legitimate disease that needs diagnosis and treatment.

We have been calling on the government for decades to support ME/CFS. While we are grateful for the IOM report until the spirit of the report is acted on – and approved treatments exist – the report is simply more words to a community that has been hearing nothing but words for decades. Until approved treatments for ME/CFS exist the million people with ME/CFS will continue to suffer – many of them needlessly.

We, therefore, request that you call a hearing to examine a treatment that has shown promise for 20 years. Experts agree that between 20-40% of patients see improvement and without a doubt it would open the gate for greatly needed biomedical research and innovation.

Your oversight powers enable you to ensure that drugs receive a just and fair review based on an appropriate risk-benefit assessment. We don’t believe this has happened with Ampligen  and we’re not surprised given the FDA’s public statement that they do not understand this disease.

We therefore ask that you bring experts in who do understand this disorder in order conduct an open and objective hearing on the pro’s and con’s of Ampligen approval for ME/CFS.

Cost Estimates: Using ME/CFS prevalence data of 0.42 and indirect costs estimates from Reynolds et al. (2004), the direct and indirect cost of ME/CFS to society is estimated to be $18,677,912,000 for the community sample and $23,972,300,000 for the U.S.. These findings indicate that ME/CFS imposes substantial economic costs to the U.S. economy, that many are suffering and all deserve to have valid treatment options.

NIH currently spends $ 5 Million annually on a disease that costs the U.S. economy 20 plus billion dollars a year.

Sincerely,
Your Name HERE:
Years of Life Lost to CFS, Number Here:


 

 

 

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