The Why
"Delicious" "Devastating" "Indispensable"
Reimagining Ruth
"..has a raw power"
Osler's Web
"A relentless, meticulous, highly persuasive expose."
Untold morbidity, unspeakable suffering. A pandemic ignored. Find answers in my new book, “The Why: The Historic Me/CFS Call to Arms.” A case history of what went wrong.
What is journalism? What is the job of every journalist? In the words of the new Dean of the Columbia J. School, Jelani Cobb, they "hold power to account and combat disinformation." That's what journalists do.
To believe Long Covid is ME is to have fallen for every bit of anti-science propaganda from CDC + NIH since '84. ME is not: "post-viral;" not a "syndrome;" cannot be caused by ANY virus; IS contagious; has been clinically well-described since 1930s; PEM hardly specific to ME
“…Exceptionally moving and marvelously written.”
“I can’t remember ever having been so moved by a book…such a wonderful and honest story….”
http://reimaginingruth.com
2/2 "Our team is working to get the study up and running as quickly and efficiently as possible," AIM CEO Tom Equels said. Enrollment will begin in 2023. Oved Amitay of Solve CFS, noted "..it is critical that we apply existing knowledge, such as studies done previously in ME/CFS"
1/2 AIM, manufacturer of ME therapy Ampligen --though FDA refused in 2012 to approve it for ME-- has won approval for Phase II trial of anti-viral Ampligen in Long Covid. 80 LC patients at ten centers will be enrolled in Phase II trial, half to receive Ampligen, half placebo.
Grieving my former colleague and friend, photographer Douglas Kirkland. Funny, fun-loving, gifted and an absolute blast to work with. His photographs speak for him; his subjects would do anything for him.
Q+A by Neenyah Ostrom w/ HHV6 expert Konnie Knox. HHV6 was discovered at NIH in 1985 in Robt Gallo's lab. Gallo found most Incline Village pwME were positive, first legit viral association in ME. ahttps://immuneillnessreport.substack.com/p/why-has-a-brain-and-immune-system?sd=pf
,
- Congress has never had a hearing about #MEcfs. Never.
- #MEcfs received zero funding from the $1.15 billion LongCOVID bill. Zero.
- There are zero #MEcfs comparator groups in the congressionally-funded #LongCOVID research.
- There are < 2 dozen ME clinicians
Dr. Frieden has...proposed what he calls a “7-1-7” ... metric...modeled on a strategy ...to address H.I.V...Every new disease should be identified within 7 days of emergence, reported to...health authorities within one day and responded to within 7 days.🤣
In her new piece, Ostrom raises several critical points about the lost "institutional memory" of ME history, including failure of 2015 IOM definition to clarify anything at all
Been waiting for years. Journos: no one is performing oversight of either CDC or NIH. Such as, interviewing execs and scientists at these agencies, building contacts, following the money, unveiling the nexus. Everyone's in the dark. A few patients + docs is an op-ed, not a story.
I have nothing but loathing for those medics who created this appalling situation, decades ago, with often tragic consequences. Shame on every single one of them, not that they give a damn.
“Maeve (like many people with this illness) suffered discrimination because there is a deeply embedded prejudice about the disease which permeates all levels of medicine and beyond.” @TimesONeill, senior Times writer, whose daughter died with ME, aged 27:
https://thetimes.co.uk/article/chronic-fatigue-syndrome-patient-coroner-inquest-5z8vsxbjq…
Feeling DIStressed lately
upon realizing that
age-wise …
I will never gain functionality
2B able 2 live & enjoy my life,
the rest of it,
indeed, even to have a daily shower
or hop in my car.
NOthing has been done 4us over decades.
Years, not decades left
for me & other #pwME☠️
I’ve been reporting on ME/CFS since the late 1980s, as has Hillary Johnson. It’s time for reporters as well as researchers to stop reinventing the wheel.
The great Hillary Mantel has died at 70. It's reported she was afflicted with chronic pain from a young age that prevented her from holding a job as an adult. She was left with writing--17 awesome books, two of them Booker prize winners. An immense loss.
This nutty proposal: a boon for shrinks and psychologists, a waste of time for US adults under 65. Especially when a life destroying, neurodegenerative disease--ME--afflicting 1%-1,2% of world population, has been derided, largely unfunded for decades
Daily vitamin helps cognition. The test? Yearly telephone interview of "Cognitive Status, Word List and Story Recall, Oral Trail-Making, Verbal Fluency, Number Span, and Digit Ordering -- relative to baseline." Cheap diagnostic + epidemiology tool for ME
"Philosophers + students of biological phenomena...have noted that human beings may study and reveal the facts of science, but that science itself is immutable...But public opinion is easily manipulated." CDC, NIH: manipulating public opinion for decades.
"People who suffer from this disease are collectively heartbroken. We mourn the children we were never able to have...we mourn the loss of our most productive years...we grieve that we may miss an old age of fond memories..." From "The Why," 94 pages
"Data from more than 1 million...worldwide showed that Fanconi's anemia, xeroderma pigmentosum, dyskeratosis congenital, chronic fatigue syndrome, and patients post bone marrow transplantation present increased risk for oral squamous cell carcinoma..."
Century old myalgic encephalomyelitis was redefined by CDC-controlled Institute of Medicine in 2015. New definition was vague + focused on fatigue, like all gov definitions pre-IOM. It's why ME and 2-yr old Long Covid are now conflated. Convenient for NIH, but science is absent
made me take off my KN95 to wear a flimsy surgical mask. (by "made" I mean she called a security guy over when I told her my mask was better) because that's their protocol. What are we even doing? This is the nation's research hospital.
The recover LONG COVID team are working hard on LC specifically. NIH are not including #MECFS, nor studying ME in its own right - ME has a range of stages, with many people with advanced forms or entrenched illness after decades not months. One does not substitute the other
It's 9 years since my dear friend and fearless advocate, the founder of May 12th Awarness Day, Tom Henmessy passed away.
I will always miss you Tom until we meet again ❤️#MyalgicE#Dysautonomia#LymeDisease