Hummingbird Foundation
“I went from feeling normal one day to having horrific cognitive and physical problems to deal with the next. It just came out of nowhere. My brain, my body and my whole life changed in an instant."
Jodi Bassett died in June 11, 2016 at home from secondary Breast Cancer. Her ME at the time was doing quite well and she was no longer housebound.
Most websites and groups deal with ME/CFS or SEID/IOM or some other name and are heavily influenced by the misinformation promoted by vested interest groups. They are unreliable, of poor quality and do not serve Patient’s with M.E. Jodi Basset painstakingly designed a legacy for all of us when she created the Hummingbird Foundation.
According to her website: "In 1995, at the age of 19, Jodi went from being healthy and happy one day, to very ill and disabled with the neurological disease Myalgic Encephalomyeltis (M.E.) the next. When first ill, Jodi was reduced to only being able to be 40% as active as pre-illness. Due to inappropriate medical advice ‘Graded Exercise Therapy’ leading to sustained overexertion (which causes serious and permanent bodily damage in M.E.) Jodi’s illness quickly went from moderate to extremely severe. By 1999 she was capable of less than even 5% of her pre-illness activity level." She did her advocacy work in bed with a laptop.
"I suddenly had severe problems sleeping, thinking and remembering, speaking and understanding speech, eating many foods that I previously tolerated perfectly well, coping with even low levels of noise and light and vibration, coping with warm weather, sitting, with my heart and blood pressure, with any type of physical or cognitive activity causing severe relapse unless within very strict limits as well as memory loss, facial agnosia, learning difficulties, severe pain, alcohol intolerance, blackouts and seizures, intense unusual headaches, burning eyes and ear pain, rashes (and other skin problems), severe nausea and vertigo, total loss of balance when I closed my eyes or the room was dark, muscle weakness and paralysis, and so on." "I felt like I had had a stroke or been in a car accident and sustained a lot of serious brain damage. Of course it wasn't a stroke or a car accident but it was sudden and severe brain damage - 10 years later I even have the MRI scans to prove it.”
That marked her and she would constantly warn about the dangers of too much exercise particularly early in the disease stage and rejected the idea that de-conditioning was causing or contributing strongly to M.E.. Research has borne that out.
The single biggest factor determining recovery and remission from Myalgic Encephalomyelitis (M.E.) at this point is undoubtedly appropriate rest in the early and/or severe stages of the illness. The importance of avoiding overexertion in M.E. can not be overestimated. M.E. patients that are newly diagnosed, or still in the acute stages especially must be given their best possible chance for recovery and be enabled to REST appropriately. Improvements in symptoms and stability of the illness can also be positively affected at every stage of the illness by appropriate activity management/reduction. Limiting activity levels to only as much as the patient is capable of dealing with may well be the single most important factor in the patient’s M.E. improving over time.
She was able to work on M.E. issues for an hour a day from her bed, but nevertheless built the huge Hummingbird's website in 2004 which came to encompass hundreds of pages. In 2009 founded the Hummingbird's Foundation. Her most important theory was that Myalgic Encephalomyelitis or M.E. is a disease separate from Chronic Fatigue Syndrome or CFS because ME is strictly a disease characterized by damage to the brain stem caused by an enterovirus infection.
Myalgic Encephalomyelitis (M.E.) is a debilitating neurological disease which has been recognised by the World Health Organisation (WHO) since 1969 as a distinct organic neurological disorder. M.E. is classified in the current WHO International Classification of Diseases with the neurological code G.93.3.
M.E. can occur in both epidemic and sporadic forms, over 60 outbreaks of M.E. have been recorded worldwide since 1934. M.E. is similar in a number of significant ways to illnesses such as multiple sclerosis, Lupus and Poliomyelitis (polio). Earlier names for M.E. were 'atypical multiple sclerosis' and 'atypical polio.'
M.E. is an acute (sudden) onset neurological disease initiated by a virus infection (an enterovirus) with multi system involvement which is characterized by post encephalitic damage to the brain stem; a nerve centre through which many spinal nerve tracts connect with higher centres in the brain in order to control all vital bodily functions. This is always damaged in M.E., hence the name 'Myalgic Encephalomyelitis.'
M.E. has existed for centuries. The term M.E. was coined in 1956 and means:
My = muscle, Algic = pain, Encephalo = brain, Mye = spinal cord, Itis = inflammation.
There are more than 60 different neurological, cognitive, cardiac, metabolic, immunological, and other M.E. symptoms. M.E. can be at least as disabling MS or polio, and many other serious diseases. M.E. is a chronic/lifelong disease that in some cases is fatal. M.E. is a testable and scientifically measurable disease with a number of unique features. It is not difficult to diagnose, even within just a few weeks of onset, using a series of objective tests.
Most of the HFME committee is or were severely disable. The HFME is run by and for M.E. patients and also aims to help those non-ME patients misdiagnosed with CFS. For more information on HFME please see: https://www.hfme.org/
Jump up↑ "HFME books". The Hummingbirds' Foundation for M.E. Retrieved Aug 30, 2018.
Jump up↑ "HFME books". The Hummingbirds' Foundation for M.E. Retrieved Aug 30, 2018.
Jump up↑ "HFME books". The Hummingbirds' Foundation for M.E. Retrieved Aug 30, 2018.
Jump up↑ "HFME books". The Hummingbirds' Foundation for M.E. Retrieved Aug 30, 2018.
Jump up↑ Bassett, Jodi (May 22, 2007). "How does M.E. affect my life?". YouTube.
Jump up↑ Bassett, Jodi (Dec 31, 2008). "What getting M.E. feels like (to me)". YouTube.
Jump up↑ "The Hummingbirds' Foundation for M.E." hfme.org.
Jump up↑ Bassett, Jodi. "A HummingbirdsGuide Videos". YouTube.
AHummingbirdsGuide: YouTube Video's Jodi Bassett founder of the Hummingbird Foundation for M.E. https://www.youtube.com/channel/UCco5TuEOTbuoS0CvoZXXNog
Why do people with M.E. desperately need your help?
The majority of articles in the media on this topic rarely contain even one legitimate fact about M.E. The majority of patients with M.E. do not have access to even basic appropriate medical care or the appropriate welfare support. What treatments M.E. patients will be given is currently decided by research involving an entirely different and vaguely defined patient group made up of non-M.E. patients.
"What is happening to people with M.E. is a gross violation of basic human rights.
It amounts to legalized medical torture and abuse of some of our most
vulnerable members of society.
It is inhuman and must be stopped."
Jodi Bassett -- The Hummingbird Foundation for M.E.