Jodi Basset : Creator of Hummingbirds Foundation For M.E. Is Dead at the Age of 39*

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Jodi Basset, longtime Australian M.E. patient, author and advocate has died. She was either 39/40 years old*. She had been illl with a severe case of M.E. for over 20 years. Her cause of death was not stated.

http://www.westannouncements.com.au/obituaries/thewest-au/obituary.aspx?pid=180305608
Our darling, beautiful Jodi, left us on June 11, at home, with her family beside her.
She was a talented artist, author and HFME activist. She was the most amazing, caring, intelligent, and funny person and we will miss her always. Her beautiful spirit is now flying free. May the winds of love blow softly And whisper for you to hear That we will always love you And forever keep you near.

All our love Mum, Dad, Claire Dan and Leila, Mark Betty and Reece.
[fright][bimg=fright|no-lightbox]http://www.hfme.org/Artwork/SP_2_lq.jpg[/bimg][/fright]Jodi Basset came down with M.E. in 1995 at the age of 19. She described her onset on the Hummingbird's website:
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.

"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.
After being prescribed exercise therapy her disease rapidly progressed until she was severely ill. For the past 15 years or so she had to spend most of her time in bed.

Jodi felt that her attempts at exercise turned what was a mild to moderate case of M.E. into a severe one that she never recovered from.
What was initially a mild/moderate case of M.E. ended up as a severe one around 4 years later (and remains so today). I am still paying the price for that terrible advice more than 10 years later and probably will for the rest of my life unfortunately.

That is one of the main reasons why I have created this site. To stop what was done to me being done to anyone else. It is such a senseless waste.
That never-ending relapse marked her; from then on in she would constantly warn about the dangers of too much exercise particularly early in the disease. She rejected the idea that deconditioning was causing or contributing strongly to M.E. and 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 about an hour a day from her bed, but nevertheless built the huge Hummingbird's website in 2004 which came to encompass hundreds of pages. Her review of CBT/GET ("Smoke and Mirrors") ran to dozens of pages. In 2009 founded the Hummingbird's Foundation. In 2011 she wrote an 160 page book called Caring for the ME Patient.

A important theme for her always was the establishment of M.E. as a disease separate from CFS. She defined M.E. strictly as a disease characterized by damage to the brain stem caused by an enterovirus infection.

What defines M.E. is not ‘chronic fatigue’ but a specific type of acquired damage to the brain. Myalgic encephalomyelitis is an acutely acquired illness initiated by a virus infection 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.
Basset was not swayed by evidence that a chronic fatiguing illnesses could be triggered by a number of pathogens. Epstein-Barr Virus played no role in M.E. for her, and neither did other infectious agents such as other herpesviruses, hepatitis, Q fever, Ross river virus, giardia, Borrelia, etc. that many now associate with the disease. She believed that M.E. was purely a enterovirus driven disorder which had strong similarities to polio.

She believed that if your brain scan was normal you had something other than M.E.

Chronic Fatigue Syndrome A Wastebasket Diagnosis

She also believed that chronic fatigue syndrome was always a waste-basket disease; that there was essentially no such disease as "CFS". If you were diagnosed with CFS, Basset felt you automatically had something else. (Ironically, almost all of the tests she listed as being determinative for M.E. were validated using patients who met the definition for CFS.)

She believed that chronic fatigue syndrome was created "for the benefit of various political and financial vested interest groups."

[fright][bimg=fright|no-lightbox]http://www.ahummingbirdsguide.com/2013/20GB_three_lq.jpg[/bimg][/fright]
‘CFS’ can only ever be a misdiagnosis, and only prevents patients from getting a correct diagnosis and appropriate (even potentially life-saving or curative) treatment. See: The misdiagnosis of CFS.

M.E. and ‘CFS’ are in no way synonymous terms. M.E. is a distinct, scientifically testable and measurable neurological disease which occurs in epidemic and sporadic forms. ‘CFS’ is a wastebasket diagnosis based on the presence of the symptom of fatigue. If serious abnormalities are found on testing, a person no longer qualifies for a ‘CFS’ diagnosis.

....The patient population diagnosed with ‘CFS’ is made up of people with a vast array of unrelated illnesses, or with no detectable illness.
Dedicated Painter

She was also a dedicated painter and regretted that her illness kept from pursuing painting more. In 2005, however, she had an exhibition and in 2012 participated in group show.
My two big passions in life are painting and M.E. advocacy.

I am obsessed with oil painting and oil paint and always will be. Oil paint is the only medium I use. I love absolutely everything about it (except cleaning the brushes afterwards!).

I can still only spend a small part of my day or week or month on painting and advocacy and I wish so much it was more but over time small efforts can really add up, I guess, as my websites show, I think.
 
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Cort

Founder of Health Rising and Phoenix Rising
Staff member
While I disagree with her on CFS, I am very sorry to hear she has passed away.
While I disagreed with her at times, she had a very difficult life, and she used what she could of it to make a difference, and I applaud her for that. The fact that she was able to build up a simply immense website while being able to work only an hour a day was amazing. Many people found solace in it...

I hope she's out there somewhere painting...
 
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San Diego

Well-Known Member
Another gone too soon. :(

ME doesn’t kill us outright, so you’ll never see it on the death certificate. Instead, it tortures us for decades then it kills us. If I got to pick my illness, this sure wouldn’t be it.

Bravo to Jodi for her valiant fight and for bringing awareness!
 

Rachel Riggs

Well-Known Member
While I am just learning of Jodi and her website, this is awful news and hard to hear -- I'm so sad that the solutions which now feel so near, have not come soon enough to save her....

I am curious why her views on ME/CFS were considered so controversial?

And also - can anybody tell me the specifics of her vitamin protocol which Jenn (from MEAction) credits with saving her life?? High doses of oral C and transdermal magnesium?? I would appreciate knowing the specifics... thank you!!
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
While I am just learning of Jodi and her website, this is awful news and hard to hear -- I'm so sad that the solutions which now feel so near, have not come soon enough to save her....

I am curious why her views on ME/CFS were considered so controversial?

And also - can anybody tell me the specifics of her vitamin protocol which Jenn (from MEAction) credits with saving her life?? High doses of oral C and transdermal magnesium?? I would appreciate knowing the specifics... thank you!!
Agreed, she was still quite young...it's a shame...

I would like to know the specifics of that protocol as well.

I think a lot of people agreed on Jodi's focus on ME. The controversial parts for me were that EBV and other pathogens don't contribute to ME (only enteroviruses do) and that there's no such thing as CFS. People who have CFS by definition Jodi thought must have another undiagnosed disease. I never really understood that.
 

ShyestofFlies

Well-Known Member
I am curious why her views on ME/CFS were considered so controversial?
If you want to read direct from the source the hummingbird foundation has pages dedicated to her and her fellows views.

The short version is that she believed that ME was a real, serious, neglected illness. Which I would agree with. Where I disagree with her is that she believed CFS was a conspiratorial fake diagnosis made for political reasons. She felt very strongly that everyone diagnosed with CFS had one or more of any of a few dozen illnesses, and that in accepting a CFS diagnoses they were accepting basically medical neglect. She was very against associating ME with "fake" CFS
 

GG

Well-Known Member
So sad, rest in peace. As far as the controversial view, who cares, she is entitled to her opinion. I was diagnosed with CFS, have had bad crashes, did the 2 day in a row CPET. Was moderate and have exercised throughout most of my illness. Do I have ME, maybe not, but the US has now combined it. I am willing to help with research, perhaps I would be a good gyny pig, but don't live near any of the research hot beds!

GG
 

Nina

Member
I read the headline and froze. Then I broke into sobs. Jodi did so much for all of us. Many have no idea how important her site was to us back in the early days. It was so validating when validation was almost nowhere else. She was fierce and brilliant. I will never forget her.
 

weyland

Well-Known Member
And also - can anybody tell me the specifics of her vitamin protocol which Jenn (from MEAction) credits with saving her life?? High doses of oral C and transdermal magnesium?? I would appreciate knowing the specifics... thank you!!
She had another site that I believe detailed this a bit more.

I am curious why her views on ME/CFS were considered so controversial?
Her views were only controversial in certain circles I would say. They reflect the opinions of the major ME experts such as Byron Hyde, Elizabeth Dowsett, Melvin Ramsay, etc.

Read basically anything that Byron Hyde has written, or this article by Elizabeth Dowsett and you'll get an idea of where they're coming from.
 

Empty

Well-Known Member
Agreed, she was still quite young...it's a shame...

I would like to know the specifics of that protocol as well.

I think a lot of people agreed on Jodi's focus on ME. The controversial parts for me were that EBV and other pathogens don't contribute to ME (only enteroviruses do) and that there's no such thing as CFS. People who have CFS by definition Jodi thought must have another undiagnosed disease. I never really understood that.
I think you did a good article which she would have really appreciated, cort. Thankyou.

I think CFS was either M.E as tightly defined or some other illness such as Cancer, Thyroid, AIDS etc. Does that help?
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I read the headline and froze. Then I broke into sobs. Jodi did so much for all of us. Many have no idea how important her site was to us back in the early days. It was so validating when validation was almost nowhere else. She was fierce and brilliant. I will never forget her.
Indeed - she was a real pioneer.....She poured all her limited energy into that website and what a website she built - plus she wrote at least two ebooks. She displayed an amazing commitment for someone who was so ill.

She's really one in a list of M.E. or ME/CFS or whatever you want to call it patients who poured everything they had into communicating and advocating for this disease. There was a guy who built up this enormous site - unfortunately I can't remember his name - who apparently collapsed after 9/11.... That was way back when it was really difficult to build websites...His health fell apart and he just disappeared!!!

Of course there was the creator of May 12, whose name which I can't believe I can remember, escapes me now.

I wonder who among us will make it to the finish line - to live to see this disease conquered or mostly conquered?
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I think you did a good article which she would have really appreciated, cort. Thankyou.

I think CFS was either M.E as tightly defined or some other illness such as Cancer, Thyroid, AIDS etc. Does that help?
Thanks - I'm glad to hear that.
 

Rachel Riggs

Well-Known Member
@Cort There's supposed to be a webinar with Montoya tomorrow at 10am PDT- it's on my calendar - but I haven't heard anything recently, nor have I been sent an access link. Do you know anything about this? Thanks!!
 

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