My continuing struggle to have honest & extensive neurological medical care with no abuse, discrimination,or intimidation which I have been repeatedly denied since 2003 to 2017 in a leading edge facility that can address my illnesses, functioning levels- Myalgic Encephalomyelitis (M.E), Fibromyalgia (FM), Hep C, And repeated brain & strokes (3) ;;and extensive muscle ligament damage, Myoclonus/ Generalized Dystonia, seizures,from 8 years of psychiatric drugging
Like all illnesses, the severity varies from patient to patient. Dr. Paul Cheney stated he had evaluated over 2,500 ME/CFS cases and it can be a nightmare of increasing disability with both physical and cognitive components. Severe cases can have both an MS-like and AIDS-like clinical appearance. Dr. Dan Peterson, found that, “ME/CFS patients experienced greater functional severity than the studied patients with heart disease, virtually all types of cancer and all other chronic illnesses”. 20 years after the epidemic, Dr. Peterson said he has never had a patient that recovered from ME/CFS. An unrelated study compared the quality of life of people with various illnesses, including patients undergoing chemotherapy, haemodialysis, as well as those with HIV (until the late terminal stage), liver transplants, coronary artery disease, and other ailments, and again found ME/CFS patients had the lowest quality of life. Dr. Leonard Jason stated in a radio interview that ME/CFS “is actually more debilitating than just about any other medical problem in the world”.
Written by Marjorie van de Sande and reviewed by Dr. Bruce Carruthers, the National ME/FM Action Network's pamphlets for patients are based on the Canadian Consensus Documents. The information is basically the same as in the questions and answers section but it is in a pamphlet format.We invite you to download our Patients' Pamphlets on FMS and ME/CFS. We encourage you to take a copy of the pamphlets to your doctors. Please advise your doctors that they may reproduce the pamphlets (providing no changes are made to them) and give them to their patients
The Summaries are quite short, and often need updating the more medical records I get in. The full story can fill a book.
I need a webmaster that can do everything, except put in the type, and puts in themes and widgets that work together, to my specificiations, and not crash the site.
I am left to fight off full body paralysis daily, and partial since 2004 and in for the fight of my life ... at least to extend it and down to the crunch now.
I may go with this blog and a more simplified version http://savingcheryl.blogspot.com I am unable to type often and need help - I would rather it be on the website more simplified .. and letter form page for people to send .......to MPP's, MPP, Ministry of health although they were invovled prior and refused hosptialization in 2005...
you can contact me @ publicappealforcheryl@gmail.com
thank you
Please Help Support Cheryls Right to Extensive Neurlogical Medical Care and Human Rights
~ We are still hopeful a Sponsor comes forward for :
a hospital advanced expertise in ME/CFS, HepC and extensive neurological damage from prescribed medications, generalized dystonia, seizures, movement disorders, 2 strokes and the extensive muscle ligament damage. Also need to be admitted for a period of time for extensive diagnostic testing, treatment, getting the dystonia's stabilized, movement disorders and damage mitigated, which is not being allowed and low functioning levels repeatedly not taken into consideration from discrimination regarding ME/CFS/FM, and since the brain damage, I am unable to make appointments, and as much as possible needs to be done in hosptail per stay periods.
As well the extensive list of adverse drug reactions put on my medical files ASAP which should have been done years ago and repeatedly refused. I am mostly bed/houseconfined documentation goes back for near 2 decades.
The damage is extensive and very complicated. Anyone else with Brain Injuries and extensive physcial damage gets top extensive neurological diagnostics, treatment facility, care and extensive recovery programs at paces they can handle as well as support for family members. I have received none.
The amount of tests that are needed, illnesses and complicated damage and with limited functioning level, very sensitive to medications, as much as possible needs to be done while admitted in hospital that can accommodate most, if not all of the honest testing, diagnosis. Treatments, care and on my way to the best recovery possible and eventually the extensive physiotherapy, speech, cognitive, I have been denied for years when I have improved enough, my illnesses and damage and healing, setting the pace.
Transportation & care provider or nurse to accompany. I am unable to bath myself, change my clothes or prepare my own food. I can walk but not much. Myocolonic dystonia convulsions, movement disorders , have to be stabilized long enough for transportation, and hopefully the generalized dystonia is not in a flare progressing to full body paralysis as of October 2010 (my power wheelchair comes with me), and need proper medications and treatments, diagnosis for movement disorder and stop the now daily paralysis. I
I have been repeatedly cut off all medications, and the myocolonic convulsions, spamoidic generalized dystonia never stabilized 24/7 , my shoulder sockets/ligaments are badly damaged from convulsing every day, as well as the left side of my body is weak & drags around, my left jaw dislocates, my teeth damaged from the dystonia. Cognitive, speech, physio therapy is needed, and regular medications including for lungs, pain, and immune therapy for the ME/CFS and Hepatitis C, as well as others are needed.
I need a in-house doctor immediately that is familiar with ME/CFS and my low functioning levels so the cycle of discrimination stops.
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~ Petitions will be set up to try yet again to get the extensive neurological medical care I have been denied, and email campaign, although all politicians and others have been written to for years, as well as media,, advocates and activists. We have little faith in a Petition after everything that has already been done to no avail with government. When Petitions and lettersare posted please forward widely. The main website hopefully will be done early 2011, I worsend so badly, it repeatedly had to be put aside.
~ Human & Patient Rights Lawyers, Canadian, USA, Worldwide Advocate Groups, Individuals please take a stand and show or add your name/support and those that can please help
To add your site/organization please email publicappealforcheryl@gmail.com or if you have Cheryl's personal email, these will be added to the actual website as well which is in the process of being done and very slowly, and have no webmaster that willl build as needed to specifications. Thank you
