President Obama has informed a US-based M.E. advocate that one of his country's leading medical research institutions will continue to encourage research into ME/CFS through two programmes that are investigating the aetiology, diagnosis, pathophysiology and treatment of the illness – which is thought to affect 1,000,000 Americans.
In a long-awaited reply to a question asked of the President by Mrs Courtney Miller when he spoke at a town hall meeting in Reno, Nevada, in April last year, Obama wrote:
“NIH [the National Institutes of Health, based at Bethesda in Maryland] expects these research programs will enhance our knowledge of the disease process and provide evidence-based solutions to improve the diagnosis, treatment, and quality of life of all persons with ME/CFS”.
In a two-page letter posted to Mrs Miller on July 26 and released on the internet yesterday, Obama reveals that before he had replied he had called for a report on the status of CFS research from NIH director Dr Francis S Collins and had now briefed his deputy chief of staff for policy, Nancy-Ann DeParle, to keep Mrs Miller in touch with developments.
And he wrote that the multi-site trial supported by the National Institute of Allergy and Infectious Diseases to establish whether a murine retrovirus is linked to CFS [the so-called Lipkin Study] is “of unprecedented scale”.
To read Obama's letter in full, click HERE.
Bob and Courtney Miller have suggested on Phoenix Rising, the main online site for ME advocacy in the US, that saying ‘thank you’ to President Obama might be a useful way of keeping the issue alive.
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We all need to thank President Obama. It is important that the President know that many patients and their families are affected by CFS and that we are grateful for his efforts. We have made it easy for patients and friends to email the White House Office of Public Engagement, with the following model email.
To: jarrettpublic@who.eop.gov
CC: courtneymiller999@gmail.com
Subject: Thank you for elevating Chronic Fatigue Syndrome
Mr. President,
I want to thank you for asking the Department of Health and Human Services and the National Institutes of Health to elevate Chronic Fatigue Syndrome in priority. I believe that a serious effort by our federal research institutes can produce the science that will restore my life. I am certain your leadership will be a turning point in the ME/CFS health crisis affecting more than a million Americans, and I am deeply grateful for your efforts.
Sincerely,
Name
State
Years ill
Obama has not made any promise regarding research for ME/CFS.
This section also not in the report on that website which has ties to the Government. If this is in the letter, then Mr Obama can be seen to be trying to influence the publics opinion of his Governments own study before the fully details of a any flaws are known and when he is already aware that it is not a replication of the methods in Lombardi et al.
“And he wrote that the multi-site trial supported by the National Institute of Allergy and Infectious Diseases to establish whether a murine retrovirus is linked to CFS – the so-called Lipkin Study – is “of unprecedented scale”.”