The amazing thing about being a part of a neglected patient population, is how, unsupported as we are by the medical establishment, we rally to support one another. Last night I got the word about Theda Myint. Though nearly done-in I immediately shared the information I'd received via Facebook and Twitter. This morning I wrote a letter. Now I need a rest, but I want to share the information here and perhaps motivate more people to get involved. Here's what I wrote:
(Honorable Prime Minister Gillard;)
(Honorable Minister Hames;)
I am writing from California, out of concern for the care of Theda Myint. Fellow ME patients around the world were shocked by her transfer from the emergency ward, where she was finally getting some pain relief, to a psychiatric ward.
ME is not a psychiatric illness, but as with any chronic pain illness such as cancer or AIDS, unremitting suffering does cause patients all too often to make attempts on their own lives. Relief of symptoms is the best way to save lives. Ms. Myint, in being confined to the psychiatric ward, was not only given inappropriate treatment but was denied the treatment and diet that could better support her through this complex illness.
While we await reasonably funding of appropriate biomedical research and long-overdue identification of the pathogens at the root of the disease, ME is best treated with a highly-individualized program of pain relief and symptom management. A wide variety of medicines and dietary approaches are prescribed for ME patients' physical distress, with in some cases the major problems being cardiac weakness and POTS, in others neural pain, or insomnia, gluten intolerance, or mitochondrial malfunction... or all of the above and more: a whole panoply of possibilities that manifest differently in each individual patient.
The right treatment approach is not only different from one patient to another, but can differ in the same patient over time, so that a treatment plan takes much patience and skill to develop over time and may involve coordination of complimentary Western and Eastern medical traditions, coordination of varied practitioners and clinics. To suddenly wrest a patient from this process and consign her to psychiatric care makes as much sense as removing a cancer patient from the care of an oncologist and assigning him instead to a podiatrist.
Too many lives have been lost already through the psychiatric mismanagement of ME. Internationally, patients, doctors, researchers, and advocacy organizations are watching and will not stand by and see another ME sufferer consigned to the snake pit of inappropriate classification. Psychiatric treatment has its place in psychiatric illness, but ME is a neuroimmune disease and its mis-assignment does no favors to the understanding of physical or mental illness. Treatment of ME as a psychiatric disease, kills patients.
Researchers at the University of Nevada, Reno, quite near my home, and around the world, are taking great strides in the understanding of physical processes in ME. I trust that you'll do everything in your considerable power to see that the progress of ME treatment is not sent backwards in your country, at this time of such great opportunity and advancement. Please use your office to insure that Theda Myint is allowed to pursue her own best individual treatment, and that while she hangs on from one painful day to the next, your government fund to the maximum extent possible biomedical research in ME.
I welcome anyone who wishes to use or adapt my letter. There's another one you can use, written by fellow patient Kati Debelic, here: http://www.facebook.com/notes/kati-debelic/help-theda-sample-letter-to-the-government-of-australia/155819144481608
The links for contacting the PM are here: http://www.pm.gov.au/contact-your-pm
For contact info of Health Minister Hames go here: http://www.parliament.wa.gov.au/Parliament/Memblist.nsf/WAllMembersFlat/Hames,+Kim+Desmond
The article that alerted the patient community to Theda's predicament: http://www.watoday.com.au/wa-news/chronic-fatigue-victim-theda-myint-locked-up-at-fremantle-hospital-after-euthanasia-attempt-20110419-1dmuu.html
And now off I go for what's now a doubly-needed rest, with a heart full of thanks to the journalists who are more and more often helping to publicize the awful predicaments of ME patients, and with gratitude that I'm a part of such a wonderfully active and caring community of patients worldwide. We are not going to just go away, and we will see our way to appropriate treatment, together. Healthy folks, we could use any help you can give to raise awareness and demand funding for the research of this debilitating and infectious disease.