Hillary Johnson: journalist @oslersweb Twitter profile

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Hillary Johnson: journalist

7 months

Untold morbidity, unspeakable suffering. A pandemic ignored. "The Why: The Historic ME/CFS Call to Arms." A case history of what went wrong.

The Why: The Historic ME/CFS Call To Arms

www.amazon.com

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Hillary Johnson: journalist

@oslersweb

2 years

Number of years since Berkeley neuropsychologist Sheila Bastien reported ME patients had a "signature" of abnormalities distinct from anything she had seen before (she noted that most were more impaired than people with brain tumors, concussions and chemical injuries)? Thirty-six

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Hillary Johnson: journalist

@oslersweb

2 years

Just read an Action for ME story dated Feb 1, 2022, claiming 250,000 people in UK have ME. When I began researching ME in 1986, the UK estimate was 250,000. In 2009, estimate was 250,000. UK headcount has remained 250,000 for at least 36 years. UK, R U sure???

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Hillary Johnson: journalist

@oslersweb

2 years

Myalgic Encephalomyelitis was renamed "chronic fatigue syndrome" by the Centers for Disease Control in 1987 and it's still being called "chronic fatigue syndrome" by the CDC and the NIH and people who don't know any better thirty-six years later.

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Hillary Johnson: journalist

@oslersweb

3 years

To call the brain damage endured by victims of ME "brain fog" is just ignorant. It's a meaningless, unscientific term which has been applied to everything from menopause to lack of sleep and and other vagaries of life that aren't even diseases

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Hillary Johnson: journalist

@oslersweb

2 months

Maureen Hanson, PhD, and I have written an op-ed for The Hill, a non-partisan Washington DC news publication with 31 million online views per month, about the seriousness of ME and the need for equally serious funding by Congress.

Sanders’s long COVID funding bill misses opportunity to aid a similar chronic condition

Sen. Bernie Sanders’ (I-Vt.) recent call for $10 billion in research grants into long COVID over ten years is a worthy initiative. But the senator is needlessly limiting his focus to long COVID. M…

thehill.com

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Hillary Johnson: journalist

@oslersweb

6 months

1) Maureen Hanson, Cornell University's ME lab chief + professor of molecular biology and genetics, gave a remarkable presentation this morning at NIH meeting. She proposed ideas--based on ME historical data--about early history, origins of ME

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Hillary Johnson: journalist

@oslersweb

4 months

“These findings, FOR THE FIRST TIME, suggest a link between specific abnormalities in the brain and ME.” From NIH press release. Full out lie, a farce. Brain abnormalities in ME have been published for decades. Predictable NIH blather. Who in science will call them out on this?

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Hillary Johnson: journalist

@oslersweb

2 years

Paul Cheney told me, referencing white matter abnormalities/lesions in ME brains doctors were questioning in the 1980s: "They may be poorly understood--but they are NOT normal." A comment that applies to numerous abnormal ME findings. Poorly understood doesn't = unimportant

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Hillary Johnson: journalist

@oslersweb

2 years

Another therapy, against EBV, that should be in clinical trials in ME immediately.

A New Therapy Attacking a Common Virus Shows Huge Promise For Multiple Sclerosis

They could be onto something big.

www.sciencealert.com

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Hillary Johnson: journalist

@oslersweb

4 years

Interesting to me how many people are concerned that longhaul covid patients might, just might, eventually be dx with ME--even a few hard-lobbying pwME. But I see zero concern expressed anywhere in these soft news stories for the millions who actually have had ME for yrs and yrs

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Hillary Johnson: journalist

@oslersweb

2 years

1/2 Ampligen manufacturer AIM says today it’s looking forward to phase II trial in Long Covid due to success in LC to date. Trying hard but failing to avoid thinking about how many PWME have died since 1991, when the 1st ME Amp trial ended early due to obvious efficacy

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Hillary Johnson: journalist

@oslersweb

2 years

Number of years since Congress ordered the CDC to determine prevalence of ME in the US population by instituting a system requiring doctors to report cases of the disease to the agency? Thirty-Six

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Hillary Johnson: journalist

@oslersweb

3 years

'Long Covid' Will Be Covered by Federal Disability Law, Biden says. Okay NIH, put $ where mouth is and declare ME sufferers equally entitled. End poverty and homelessness of pwME who have been repeatedly denied even meager support because you declared ME patients were malingerers

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Hillary Johnson: journalist

@oslersweb

4 months

Brace yourself for wall to wall press coverage of NIH/NINDS study tomorrow. Embargo lifts at 5 a.m. Hype aplenty. NIH needs to brag about it's first ME study since 1989. Begun in 2016, abandoned in 2020. Seventeen patients (orig. plan: 40), sick less than 5 years, mild disease.

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Hillary Johnson: journalist

@oslersweb

10 months

1/4 A page has been turned. Cornell molecular biologist Maureen Hanson, a member of the National Academy of Sciences, quietly debunks some of the dearest-held illusions that have clung to ME for years, skewing research.

The viral origin of myalgic encephalomyelitis/chronic fatigue syndrome

journals.plos.org

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Hillary Johnson: journalist

@oslersweb

11 months

Since the '80s, pwME have been telling the media how sick they are, how diminished their lives are, pleading for sympathy from consumers of said media. Sympathy isn't going to cut it. I'm sorry to say. People don't care. Organizing, politicking, good science are sole solutions

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Hillary Johnson: journalist

@oslersweb

3 years

"ME/CFS is a devastating disease that affects over 250,000 individuals in the UK." I read this all the time. Funny how the estimated # of pwME in the UK has remained the same since the 1980s.

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Hillary Johnson: journalist

@oslersweb

2 years

NIH offers $7 M a year for 5 yrs to ME researchers. End point: 2028. Forty-five years of 0 to near-0 funding. In contrast, Pres Biden proposes $850 M in 2023 for AIDS, plus $9.5 billion to reduce HIV to 90% by 2030. How many more ME suicides, starvation, and lymphoma by 2030?

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Hillary Johnson: journalist

@oslersweb

2 years

@LitsaDremousis Multiple Sclerosis was often called "the faker's disease" prior to advent of MRI technology in 1985, when brain lesions could be visualized. Some MS sufferers had been confined to mental institutions until then.

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Hillary Johnson: journalist

@oslersweb

3 years

Nuclear physicist, husband, father, doctor, researcher, genius. My Lodestar. History will prove him to be the most brilliant, innovative ME investigator of the 20th century. His influence is vastly underestimated. I am suddenly terrified to have ME in a world without Paul Cheney

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Hillary Johnson: journalist

@oslersweb

10 months

1/2 Imagine: 40 years after AIDS appeared researchers were still pursuing wide ranging hypotheses about the cause of AIDS fatigue—while having no idea what pathogen caused AIDS and refusing to look for agent or or even talk about it. Or insisting anything could cause AIDS.

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Hillary Johnson: journalist

@oslersweb

6 months

Most know "CFS" was a designer name ginned up by CDC in '88 to defraud the public about reality of epidemic ME. Those who persist with "ME/CFS" are helping CDC save face. "CFS" represents a devastating history of gov corruption + lies. The insulting hybrid perpetuates the lies.

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Hillary Johnson: journalist

@oslersweb

8 months

I will be live tweeting from the NDUCI 2023 conference about chronic illness, with special attention to talks by Avindra Nath on "ME/CFS data," and Dr. Maureen Hanson on "The Enterovirus Theory of Disease Etiology in Myalgic Encephalomyelitis: A Critical Review"

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Hillary Johnson: journalist

@oslersweb

1 year

I'm trying to think of the worst thing the fed gov did to pwME since 1980s. Aside from CDC's re-naming the disease, stealing millions meant for research, killing pathogen research + lying to the press, I think it was CDC's and FDA's decision to kill Ampligen as ME therapy in 2012

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Hillary Johnson: journalist

@oslersweb

2 years

1/2 ME 1987: "chronic fatigue syndrome" not yet invented; MRI + SPECT brain scans visualizing brain damage; lymphocyte abnormalities (NK, T, + B cells) accruing; research underway on transmission; connection to B-cell lymphoma under investigation. Advocates = political activists

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Hillary Johnson: journalist

@oslersweb

9 months

Another assisted suicide by ME sufferer. How many over last 40 years? I think of the white collar criminals I met at CDC, who were stealing ME research money from Congress for their pet projects w/ impunity in 80s+90s and lying to Congress (a felony) to get larger sums every year

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Hillary Johnson: journalist

@oslersweb

8 months

Due to interest in the first NIH clinical trial in ME in nearly 30 years, I'm retweeting a presentation yesterday by Avindra Nath, an NIH investigator specializing in brain infections, at the "New Developments in Understanding Chronic Illnesses" conference.

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Hillary Johnson: journalist

@oslersweb

3 years

4/4 Forty years after ME began spreading through general population (now endemic), resulting in afflicted starving to death, committing suicide, dying of lymphoma and heart failure, CDC still talking about tiredness. How much longer will ME community allow CDC to burnish the lie?

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Hillary Johnson: journalist

@oslersweb

9 months

This old canard. After 40 yrs, what's remarkable is how little research has been undertaken to identify/isolate the "biological pathway" (virus) that causes ME, thanks to moronic theory below. Those few who tried? Destroyed professionally. Problem: very few actually want to know

Paul Garner

@PaulGarnerWoof

9 months

3. After over 40 years of research on CFS/ME, no specific biological pathology has yet been identified. It is time to consider a more holistic view, encompassing biological, psychological, and social factors.

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Hillary Johnson: journalist

@oslersweb

2 years

Do pwME born after 1990 comprehend the 40-yr denigrating, criminal activity of US gov to bury ME? Do they actually believe the Feds when they talk about solving ME? I asked NIH veteran Frank Ruscetti what NIH staff really thought about pwME. "They hate them," he said.

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Hillary Johnson: journalist

@oslersweb

10 months

People need to understand that ME is not exclusively the problem of sufferers. ME affects the entire culture, the economies of nations. It’s not solely the problem of patients, who are exceedingly unfortunate to be forced to bear this burden alone, waiting for help, yet to arrive

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Hillary Johnson: journalist

@oslersweb

2 years

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.

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Hillary Johnson: journalist

@oslersweb

2 years

Number of years since Michael Caligiuri published his paper, "Phenotypic and Functional Deficiency of Natural Killer Cells in Patients with Chronic Fatigue Syndrome" in the Journal of Immunology. Thirty-five.

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Hillary Johnson: journalist

@oslersweb

4 months

NIH: four of 17 patients experienced spontaneous remission? This paper should have come with an apology. NIH is still hung up on figuring out: is ME real? Effort should have been isolating cause instead. Gov needs to fund but stay out of MD research.

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Hillary Johnson: journalist

@oslersweb

4 months

1/1 Is ME a degenerative disease? Long-time sufferers know it is, even if rarely if ever addressed. New paper connects brain damage and duration of illness.

Subcortical and default mode network connectivity is impaired in myalgic encephalomyelitis/chronic...

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex chronic condition with core symptoms of fatigue and cognitive dysfunction, suggesting a key role for the central nervous...

www.ncbi.nlm.nih.gov

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Hillary Johnson: journalist

@oslersweb

5 years

when people talk about ME "extremists," apparently differentiating them from more acceptable "advocates," what or who are they actually referencing? People who use 4-letter words? People who criticize government figures? Seriously, what is an ME "extremist"?

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Hillary Johnson: journalist

@oslersweb

3 years

Imagine NIH saying studying long covid may, as a bonus, inform them about ME. They had 40 years to learn what ME is and chose not to. They are still choosing not to study ME. Their long Covid logic is most ambitious gaslighting event since 80s pandemic. 9,200 papers on ME-ignored

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Hillary Johnson: journalist

@oslersweb

9 months

Amp a powerful antiviral + immune modulator. If FDA approves Amp for LC, how will agency explain its inexcusable 32-year refusal to approve for ME? Would ME patients still have to pay $40,000 a mo. for Amp in FDA's forever clinical trial? Could MDs prescribe Amp off-label for ME?

Junior

@nolimitjuni0r

9 months

That’s it I’m pushing all my chips to the center of the table. Ampligen is gonna be the drug that changes everything. I can feel it.

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Hillary Johnson: journalist

@oslersweb

2 years

Dan Peterson sent brain samples to NIH in mid-1980s and NIH said “We’re not interested”

MEist

@tagaktiv_

2 years

@BhupeshPrusty Where might we be today with #MECFS research if we had looked at brain biopsies back in 1984?

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Hillary Johnson: journalist

@oslersweb

5 years

'You had one job...' How many times have we read, "My doctor told me to exercise and I ended up bedridden" CDC shd create public campaign (as they do for so many other public health problems) alerting MDs and public to this danger. Avert severe ME, CDC. Let's see some PSAs ASAP

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Hillary Johnson: journalist

@oslersweb

3 years

As a pwME since 1986, I could care less about compassion. Instead, I want the US Congress to force--via legislation--NIH grant support of EXTRAMURAL research to identify the CAUSE of ME. I've watched: 4 decades of sympathy-seeking have produced zero results. Screw compassion

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Hillary Johnson: journalist

@oslersweb

1 year

Have you ever had the sensation when sitting in a doctor’s office working really hard to explain your medical history that you are speaking to a cardboard box?

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Hillary Johnson: journalist

@oslersweb

1 year

Left ventricle isn’t filling (heart failure)? TIAs and shrinking brain mass? 40 percent of blood supply missing? Can’t stand without fainting? Autonomic nervous system shutting down. Can't swallow? Death by starvation? Okay--let's spend millions on 100th study of gut microbes

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Hillary Johnson: journalist

@oslersweb

6 months

It's about restoring a descriptive medical name first used in 1950s by clinical-researcher experts. "ME" was buried in 1988 by cynics at the Centers for Disease Control who wanted ME to go away, FAST. They succeeded beyond their wildest dreams. 2024: time to dispense with "---"

Neurologist Mom

@NeurologistMom

6 months

“Why can't we use encephalomyelitis? That means inflammation of the brain and spinal cord. When will we be able to use the name ME instead of ME/CFS and get rid of CFS? That's my main comment." Dr. Maureen Hanson, from today’s NIH meeting #MECFS #longcovid #longcovidkids

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Hillary Johnson: journalist

@oslersweb

4 years

And another thing. Fascinating to me that after 40 years of feigning ignorance of ME, or denying its existence, CDC and NIH scientists and MDs all over are now proposing long Covid sufferers have it. The ME story is so insane, no one would believe it. Where are the satirists?

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Hillary Johnson: journalist

@oslersweb

3 years

A thousand PhD dissertations about the way language has been used to denigrate, deny, diminish and disappear the reality of the disease myalgic encephalomyelitis for past 40 years are waiting to be written

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Hillary Johnson: journalist

@oslersweb

4 months

NIH: no difference in cognitive performance on neuropsych tests; no difference in NK cells; no difference in 40 minute (!) tilt table testing. R U kidding me? And NIH claiming their work is best ME study ever?

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Hillary Johnson: journalist

@oslersweb

6 years

In 2018, a 21-year-old woman starves to death in her bed because the British med establishment has refused to investigate in any serious way a disease on the radar in UK since Royal Free outbreak. A disgrace to Britain and all of medicine.

Inquest into British girl's death after rare disease takes her life | Newshub

Merryn Crofts' mother recounted the heartbreak of her daughter's suffering.

www.newshub.co.nz

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Hillary Johnson: journalist

@oslersweb

2 years

1/2 So Fauci is taking his marbles and going home--skating away, uncharged. The tragic consequences of his decision in the early 1980s to dismiss ME as psychiatric and unworthy of study live on in the millions of destroyed lives and families, and losses to the culture and economy

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Hillary Johnson: journalist

@oslersweb

5 years

"We know we're dealing with a genius virus" Maureen Hanson. Finally--a scientist with the guts to state a long obvious fact that ME is caused by a virus, a "genius" virus compared to HIV, Zika, polio; a virus clever enough to hide its damage to victims, masking reality of ME.

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Hillary Johnson: journalist

@oslersweb

2 years

"It should be clear to everybody that NIH is all about trying to understand the biology underneath ME/CFS and never say it's all psychological." Okay Walter Koroshetz, then call the NY Times and ask for an interview; tell NYTimes that Stephen Straus and Anthony Fauci were wrong.

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Hillary Johnson: journalist

@oslersweb

2 years

More evidence, as if it were needed after 40 years, that ME is an active infection. Pls don't call it "post"

Tom Kindlon

@TomKindlon

2 years

New US study: EBV/HHV-6A dUTPases contribute to #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome pathophysiology by enhancing TFH cell differentiation and extrafollicular activities Free: #MEcfs #CFS #MyalgicE #PwME #ME #MyE #MEeps

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Hillary Johnson: journalist

@oslersweb

2 years

Dear NIH, you really blew it. Prusty studies post mortem brain samples to find destructive virus HHV6 reactivated throughout central nervous system in ME but not controls.

Bhupesh K Prusty

@BhupeshPrusty

2 years

ME/CFS paper Alert: Our study on tissue specific, localized herpesvirus infection in ME/CFS is now accepted for publication. Many thanks to the reviewers and the funders.

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Hillary Johnson: journalist

@oslersweb

4 months

NIH begins by dissing all prior research and blames the lack of treatments on their claim of bad research. It will fall on medical/ethical historians to point out lack of therapy 100 % due to NIH’s refusal to fund research grant proposals on ME for decades.

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Hillary Johnson: journalist

@oslersweb

3 years

FWIW: ME and Covid Vaccination

Expert says some chronic fatigue syndrome sufferers should be exempt from Covid-19 vaccination

One of the country's leading biomedical scientists has written to the prime minister and director-general of health urging vaccination exemptions for chronic fatigue syndrome sufferers.

www.rnz.co.nz

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Hillary Johnson: journalist

@oslersweb

7 months

NIH ME meeting: Cornell immune expert Jessica Maya presents exhausted T-cell data from patients sick from 2-30 yrs. Drew PBMC's after 2-day cardiopulmonary tests. Describes series of T-cell subset experiments. Concludes data "supports the idea of a chronic viral infection in ME."

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Hillary Johnson: journalist

@oslersweb

4 years

2020--NIH discovers ME!!! "It was striking to hear the extent to which PEM can affect quality of life...The widespread body symptoms, the unpredictability of PEM, and the sometimes-lengthy recovery greatly hindered individuals' ability to live a 'normal' life." NIH press release

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Hillary Johnson: journalist

@oslersweb

5 years

Always interesting when a "non-believer," especially an MD, acquires ME and the scales fall from their eyes. For most, ME remains in the theological realm. You "believe" in ME only when you acquire it. Until then, science takes a back seat

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Hillary Johnson: journalist

@oslersweb

3 years

How often must it be said??? "chronic fatigue syndrome" does not exist in nature. It is a series of empty words contrived by a handful of government scientists in 1987 seeking to camouflage an incurable brain infection rising in incidence faster than AIDS. A lie + an obscenity

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Hillary Johnson: journalist

@oslersweb

2 years

Just once I would like to see an MD who knows more than I do about ME. In my experience, the specialists who should know the most but know least are neurologists--the more estimable the more ignorant. They act proud to have never sullied their reputation by reading a single paper

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Hillary Johnson: journalist

@oslersweb

6 months

8) Hanson proposed new funding mechanism for ME, LC and other diseases, called "PAIDS" for post-acute infection disease syndromes. AIDS (which even now continues to receive billions annually in gov funds) and "PAIDS" should receive identical sums of money annually, she said

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Hillary Johnson: journalist

@oslersweb

5 years

Some things I’ve learned about having a disabling disease most people know nothing about for 35 years: whether friends, family or strangers, few if any will express sympathy, concern or interest, ever

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Hillary Johnson: journalist

@oslersweb

3 years

Why is starvation in ME so little discussed? In the 21st century, once perfectly healthy people now suffering from ME in their 20s and 30s are so ill they are STARVING. It has been a cause of death in some unknown number of pwME. It is barbaric and insane that this continues

sarah swastrosarah.bsky.social

@swastrosarah

3 years

ME is killing my daughter (26). @WesselyS please explain. How is GET viable or safe treatment when energy transportation is progressively impaired? 9 years of steady decline without proper treatment. She is starving to death. Doctors don’t know how to help. You can @Jeremy_Hunt

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Hillary Johnson: journalist

@oslersweb

2 years

Thank you Twitter friends for making my new book, “The Why,” number 7 in “cfs” books on Amazon in just two days. “The Why” is a trenchant look at the extreme harm CDC visited upon PWME and the ways CDC has suppressed scientific progress.

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Hillary Johnson: journalist

@oslersweb

5 years

An urgent warning. ME DOES get worse as you age. Scientists are not looking for the pathogen + unlikely to get "there" in time to help b'cause NIH controlling research. No urgency, political agenda. Who will take care of aging PWME who cannot afford assisted living? Where to go?

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Hillary Johnson: journalist

@oslersweb

5 years

If 80 percent of ME patients were men--whose brains were shrinking from oxygen starvation and pocked with lesions and suffering trans ischemic attacks and significant loss of IQ--would the government have wasted two decades devoting more money to male pattern baldness?

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Hillary Johnson: journalist

@oslersweb

3 months

Speaking at a forum to honor Ian Lipkin at Columbia U today, Derya Unutmaz, an NIH center grant recipient and T-cell expert, noted of patients with ME: "These are the most immune-perturbed patients I've seen after HIV."

Derya Unutmaz, M.D.

Researches the mechanisms of human T cell differentiation, activation and regulation in the contexts of normal immune response, diseases and aging.

www.jax.org

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Hillary Johnson: journalist

@oslersweb

3 years

After 35 years of ME, I was recently informed by the Internal Revenue Service that my identity had been stolen. About time someone noticed.

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Hillary Johnson: journalist

@oslersweb

3 years

The remarkably prolonged and institutionalized problem of neglect of myalgic encephalitis by CDC/NIH will not be solved by people lying in their beds tweeting. It just won't.

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Hillary Johnson: journalist

@oslersweb

5 years

Ron Davis: SS-19, an experimental drug that repairs mitochondria, designed for people with congestive heart failure, turned ME blood into control blood. OMF working with inventor.

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Hillary Johnson: journalist

@oslersweb

6 months

Fauci's recs for how to solve ME: So predictable, so ridiculous. He buried, then lied about ME for 3 decades and he's still at it. Idiot wind "First, stick with only post-COVID patients; do not dilute your sample with other post-viral conditions."

Anthony Fauci and unlocking the biggest mystery in medicine

Doctors are on the front lines of long COVID, affected between 1 and 2 million people in the U.S. Here's what's been learned so far.

www.inquirer.com

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@oslersweb

6 months

ME outbreak has been worthy of the equivalent of multi-billions in AIDS $$ since the 1980s. But Tony Fauci continually reassured Congress (in an oxymoronic way) that not enough was known about ME to justify spending money on it. Seriously--that is what Fauci told Senate committee

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@oslersweb

3 years

Wondering if Bill Gates is scratching his head, asking buddies Fauci and Collins about ME. "But--all these years you said it was 'bullshit'--now you're saying everyone with long covid actually has ME? So--everyone with long covid has a bullshit disease?"

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@oslersweb

4 years

36 yrs ago Berkeley neuropsychologist Sheila Bastien began to examine dozens of ME patients, referred by Nevada doctors Cheney + Peterson. She saw a "totally distinct signature." Bastien: pwMe are "more impaired than people w/ brain tumors, concussions + chemical injuries"

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@oslersweb

6 months

Why not issue an apology for NIH's ME "expert" for 15 yrs and Fauci's front man: Stephen Straus. He told the press that ME was a problem of women with "histories of unachievable ambition, poor coping skills." NIH has let that stand for 30 years. Start telling the truth about ME.

Walter J. Koroshetz

@NINDSdirector

6 months

Very saddened to hear of the loss of Beth Mazur. She was the co-founder of #MEAction and a courageous advocate for research to help those suffering with ME/CFS.

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Hillary Johnson: journalist

@oslersweb

5 years

NIH asks patients what NIH can do to attract young researchers to the ME field. Too bad they don't make it a priority to start supporting older, deeply-experienced researchers who actually know something about ME. NIH should be begging them for help given public health emergency

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Hillary Johnson: journalist

@oslersweb

2 years

It’s outrageous that sufferers of myalgic encephalomyelits have been denied Ampligen for over 30 years by US Health Dept. Voted down by CDC’s Beth Unger and Harvard’s Tony Komaroff in 2012. FDA lets PWME suffer, deteriorate + die prematurely when a safe, effective therapy exists

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Hillary Johnson: journalist

@oslersweb

6 months

7) "But the major difference is in funding." $1.15 billion for LC from NIH vs. $13 million for ME in 2021." Hanson cited AIDS a second time. "There are 1.2 million living with AIDS in US. But there are over 3 million people barely living with ME.

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@oslersweb

5 years

Why we continue to read (or hear) ME is mysterious, hard to diagnose. Also, that little is known + there’s been hardly any research. Journos keep reporting what they read in their newspaper’s morgue. An enormous body of research exists. ME is very well described

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@oslersweb

9 months

This is just sad. Researchers who've been working in ME field for decades presenting data to NIH, as if NIH didn't have this information in real time. NIH should have acted on it in the 1980s, 1990s. Playing dumb, requiring a "roadmap" in 2023--tragic.

Recordings - ME/CFS Research Roadmap Webinar Series

Recordings Nervous System Immune System Metabolism Genetics Chronic Infections Physiology Lesser Studied Pathologies Circulation Nervous System Transcript Immune System Transcript Metabolism Transc...

event.roseliassociates.com

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Hillary Johnson: journalist

@oslersweb

6 years

CFS is not a disease. There is no CFS. It was the result of an exercise in corporate branding, like Big Mac, by a handful of cynical private docs and CDC bureaucrats who were trying to defang reality of ME in 1988, as has happened repeatedly since and is happening now

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116

Hillary Johnson: journalist

@oslersweb

2 years

2/2 ME 1988: "CFS" introduced by CDC; NIH steps in to kill research $ to grant applicants. ME recast as "tired." Prestigious investigators leave field. Opportunists refocus research on psych, hysteria. Advocates = lobbyists who advise: "use your inside voices." Yuppie Flu a thing

1

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120

Hillary Johnson: journalist

@oslersweb

2 months

Nath is telling ME "community" they need to stop criticizing NIH, instead pwME need to THANK NIH, because gov took on this research over and above whatever else they were doing. When will NIH stop seeing ME as a poor stepchild and treat it like the a major disease it is?

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Hillary Johnson: journalist

@oslersweb

2 years

"I never thought, having lived through the AIDS epidemic, that I’d say this, but the government and the establishment treated these patients worse." - Michael Denneny (Editor, "Osler's Web," "And the Band Played On") quoted in Publishers Weekly 1996

4

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114

Hillary Johnson: journalist

@oslersweb

4 years

pwME were better off in 1986 when ME briefly dubbed "chronic EBV disease." By 1988, "CFS" label let a relieved world know ME was a hilarious manifestation of female malingering + hypochondria. Will ME ever be decoupled in the imagination from CFS? Will science ever turn a corner?

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112

Hillary Johnson: journalist

@oslersweb

4 years

38 years ago my boyfriend told me there was a new disease going around Los Angeles. "Tell me about it," I said, humoring him. "Well, it's like mono--but it never goes away." "Never? Ever?! That's ridiculous. I don't believe that," I said.

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Hillary Johnson: journalist

@oslersweb

4 years

Isn’t it about time that pwME sufferers stop being grateful to people merely because they do ME research? Isn’t it time to demand top scientists start doing serious, top-flight biological research? There is desperate need for new faces, new disciplines + new, science-based ideas

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23

111

Hillary Johnson: journalist

@oslersweb

2 years

Some suggest $35 million, 5-yr commitment a miracle given so many NIH bureaucrats think ME will be resolved by solving Long Covid.🤡 In 2021, NIH awarded LC $1.15 billion over four years. $287 million per yr to long Covid--$7 million per year to ME--40 years of criminal neglect

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112

Hillary Johnson: journalist

@oslersweb

3 years

1/2 Congratulations to top ME scientist Maureen Hanson, Liberty Hyde Bailey Professor in the Dept of Molecular Biology & Genetics at Cornell. She has just been named to the American Academy of Arts and Sciences for cellular and developmental biology!

5

27

112

Hillary Johnson: journalist

@oslersweb

5 years

@sapinker They are not advocates with "politically sacred theories," they are sick people fighting for their lives. The facts of ME, as opposed to theories, are available to you. Educate yourself before pushing trashy, theory-laden Psych Today blogs parading as fact-based on Twitter

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113

Hillary Johnson: journalist

@oslersweb

5 years

Why are AIDS "activists" lauded as noble, brave and constructive and ME activists, who mostly just tweet from their beds, portrayed as out-of-line, destructive and ignorant?

4

27

109

Hillary Johnson: journalist

@oslersweb

4 years

1987. First paper on Natural Killer cell deficiency in ME. Bio-marker ignored by CDC/NIH. NK cells are part of body's anti-viral defense system. pwME had too few NK cells. Remaining NK cells had reduced killing power. Could not "lyse" (destroy) EBV.

Phenotypic and functional deficiency of natural killer cells in patients with chronic fatigue...

Natural killer (NK)3 cells are large granular lymphocytes that appear to play a significant role in the host's defense against viral infection. We performed an extensive phenotypic and functional...

pubmed.ncbi.nlm.nih.gov

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39

111

Hillary Johnson: journalist

@oslersweb

2 years

Just before a handful of CDC staff and outside consultants renamed ME "chronic fatigue syndrome" in 1988, a prestigious infectious disease specialist took his name off the paper. "Is your intention to create a new category of mental illness???" he wrote.

The Why: The Historic ME/CFS Call To Arms

www.amazon.com

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45

108

Hillary Johnson: journalist

@oslersweb

4 years

Clueless New Yorker valentine to Fauci describes how he led U.S. through AIDS, Ebola, Zika, etc. The mother of them all--ME--doesn't even make the list, because Fauci disappeared ME so deftly from 1980s on starting with rename "chronic fatigue syndrome."

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103

Hillary Johnson: journalist

@oslersweb

5 years

Jose Montoya--the best of the best. His talent will not languish for long. A brilliant MD who singlehandedly turned Stanford around on ME years ago, who believed the FIRST patient he ever saw--at a time when powers at Stanford had decreed ME patients could not even be seen there.

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101

Hillary Johnson: journalist

@oslersweb

3 years

What if there was no such thing as “post viral?” What if the causative virus is always infectious and always causing disease once acquired? Why assume an “exhausted” immune system or one on overdrive? Will post viral theory be source of hilarity 20 yrs from now?

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107

Hillary Johnson: journalist

@oslersweb

6 years

Here are my 4 simple dx criteria for ME: If U are sicker than U ever dreamed possible, must crawl from your bed to the bathroom, lack the strength to lift a cup of tea to your lips, and every doc you consult sez they don't know what's wrong with U, YOU HAVE ME! Welcome to hell.

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Hillary Johnson: journalist

@oslersweb

3 years

Great news! Given overt similarities between MS and ME, (debilitating fatigue, brain, immune abnormalities, etc.) the MS Society has lobbied successfully for a $1 billion-plus NIH research grant for ME, in hope that extensive studies of of ME might provide clues to MS. I kid!

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Hillary Johnson: journalist

@oslersweb

2 years

@ZoeMartell1 Because: how could FDA approve a powerful anti-viral drug for a disease NIH and CDC had pitched to gen public as hypochondria, depression, hysteria, a problem of under achieving women (or over-achieving), etc.

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