PANDORA & the ME/CFS Worldwide Patient Alliance kicked off the “Doctors Need to Know” Campaign on March 1st and it runs through March 15th and every ME/CFS patient is needed to get involved! As a chronic illness community, we have found that if we want to get any results and any action taken for ME/CFS, we have to do the work ourselves because the CDC and the organizations who are supposed to be out here working for us aren’t doing their jobs.
As we are all very well aware, the research of the biological nature of ME/CFS has not been getting to the physicians, or if it has, they have been completely dismissing it. The ME/CFS Worldwide Patient Alliance says:
This is detrimental to patient quality of life in that a majority of patients have little or no access to knowledgeable medical care. We also acknowledge that this physician ignorance contributes to patient challenges in documenting their disability.
So with this in mind, the “Doctors Need to Know” Campaign is asking all ME/CFS patients to send out the following:
- 5 hand-written letters to 5 local physicians in your area. The sample letter can be as follows (you can view all instructions & info at the ME/CFS Worldwide Discussion Board):
The suggestion of a hand-written letter is because it will hopefully cut through the clutter of other letters and draw attention of assistants and physicians. It will look personal, just like people sift through their own mail and anything hand-written catches the eye because it is likely something personal. But this is only a suggestion. If you find writing five short letters by hand too difficult, please do what you can.
Suggested letter content:
I am an ME/CFS (chronic fatigue syndrome) patient who lives in ______________________. I thought you might be interested in these documents of recent scientific developments in ME/CFS. If you would like more information, go to the IACFS/ME website or contact me.
Thank you for your attention.
The other documents the campaign is asking us to submit are scientific findings/documents such as:
- National Institutes of Health announcement of their retrovirus findings.
- Press release announcing unique proteins are found in spinal fluid of ME/CFS patients.
- National Cancer Institute announcement of the original study, with Whittemore Peterson Institute and Cleveland Clinic, that showed high level of retrovirus in ME/CFS patients.
- List of top ten biological discoveries in ME/CFS patients, according to Dr. Anthony Komaroff, a professor at Harvard Medical School.
If you don’t have a doctor that understands ME/CFS, sending them a letter wouldnt’ hurth either!
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