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Carol Head
@PlzSolveCFS I agree that the publication of this report is one of the most important days in the history of this illness.
Head: "Our organisation does not purport to represent all patients. No one can do that."
Head: "We do purport to use vigorous research and evidence based data to obtain additional research funding for
#SEID
Head: "And to be clear, that is why we are here today. Because it is time for our Govt. to increase funding and support for this disease.
Head: "We believe the
#IOM report is a turning point in the history of this disease.
Head: For all of us who are patients the
#IOM report is like confirming that water is wet. We all ready knew the illness is real.
Head: But we patients - who all ready know this - are not the audience for the
#IOM report.
Head: The audience is legislators, doctors, federal officials and private foundations who now see the official stamp of approval that yes indeed this is a serious, debilitating, physical disease.
Head: We believe this report is the defining moment for 2 key reasons: a disease not a syndrome - removes barriers to funding & stigma. Funding agencies now have a bright green light to move forward commensurate with the number of Americans who suffer with this illness. The seriousness of this illness can now only be refuted by those who chose to remain ignorant
Head: There are very few research dollars available to replicate even the most compelling findings in ME/CFS research to date.
Head: The other thing that has not changed with this report is that hundreds of thousands continue to suffer usually without a diagnosis.
Head: At 27 minutes read the story of 'William' who obtained top exam scores in his state as a child and 17 years later can't feed himself.
"Is our country willing to leave so many lives like mine be left like detritus on the highway, largely ignored?" William.
Head: There are hundreds of thousands of William's who suffer intensely. We must change that.
Head: The name of the disease - CFS - has kept it from being recognised for the serious, debilitating disease that it really is.
Head: With this new
#IOM criteria, diagnosis can become much more straightforward.
Head: This disease has been incorrectly described as a psychological illness and still is in many quarters. This mistaken attribution of a physical illness as a psychological illness has often occurred historically with diseases that are complex and women predominate. We recognise that psychological illnesses are real and cause extraordinary pain, but it is simply not true that ME/CFS is among them. This
#IOM report clearly puts that long-standing, damaging, misconception to rest.
Head: Why should ME/CFS matter to all Americans? Our Govt has estimated a $17-24 billion economic burden on the nation.
Head: What patients want most is to rise from their beds, be productive, return to work and lift the burden of their care from others.
Head: Funding per patient: $283 Lupus. $255 MS. $5 ME/CFS (based on 1 million patients).
Head: Spending on ME/CFS patients is 2% of what is spent on Lupus, 2% of what is spent on MS, and 9% of what is spent on Autism.
Head: These are all serious medical conditions and we don't disparage our Govt commitment to spending on them, but I must illustrate the *enormous* disparity in spending. It is not incremental. It is not small. It is orders of magnitude disparity in spending.
Head: Spending a lot of time talking about funding disparity Period 1987-2012 spending actually dropped 27% while total NIH funding doubled
Head: Average spend over recent years to 2014 around $5 million on ME/CFS
Head: Understanding the burden on our nation, the suffering of patients, and the new disease validation from the
#IOM report, what next?
Head: So many actions can be taken to do right by patients, our family, and our nation's economy, but I ask today for only three:
Head: One - provide funding for biomedical research studies commensurate with the disease burden: roughly $250 million a year.
Head: Two - Need a strategic and tactical plan to solving disease across agencies. Consider removal within NIH from Women's Health.
Head: This disease needs an institutional home within federal govt. this is appropriate and can advocate for dollars and action.
Head: Three - as called for very clearly in
#IOM report accelerate education of our nations medical professionals. The patients cannot wait.
Head: This means for example: updating CDC primer and acting on
#IOM recommendations to disseminate information effectively.
Head: In conclusion... "I believe that this is the beginning of the end of this tragedy that is not worthy of the American people..."
Head: Read story of Cheryl an ME/CFS patient who later had non hodgkin lymphoma. Despite enduring chemo said she would rather the cancer.
Head: With the cancer, Cheryl found compassion, care, therapy and treatment The cancer has gone but ME/CFS continues with none of the above.
"Lymphoma might kill you, but with ME/CFS you linger in a dark hellish twilight for the rest of your days." Cheryl.
Head: This definitive
#IOM report has once and for all declared that we must commit funding to research to eradicate this dreadful disease.
Head: "Now there can be no excuses. No excuses from our nations health agencies that haven't funded research... No excuses from anyone. No excuses from doctors, patients, families, co-workers who dismiss this devastating suffering of a million or more Americans."
Head: One day the scepticism about ME/CFS and the poor treatment of those who suffer from it will be as equally unimaginable as it is in MS.
Head: "With this highly credible, scholarly,
#IOM report, now is the time to commit to solving ME/CFS."
