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Myalgic Encephalomyelitis and the CDC's misappropriation of funds allocated for M.E: We didn't get here by accident

I've had M.E. for 32+ years and have written about it extensively for the Washington Post and for other publications.

Since I first became ill in 1991, the CDC and the NIH have been derelict in their duties to protect the public from a pernicious illness that's disabling, degenerative, and potentially fatal.

In Hillary Johnson's seminal tome Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic (Crown Books 1996, reissued by Penguin Books 2006), she broke the story that the CDC had misappropriated tens of millions of dollars approved by Congress for the study of M.E., then still called "Chronic Fatigue Syndrome" or "CFS".

[Edit: When I first published this piece last night, I incorrectly wrote that the Washington Post had first broken this story. Hillary Johnson and I have known each other online for years--which I've always considered an honor because I first read her reporting on M.E. in Rolling Stone in the Eighties--and I appreciate that she reached out to me to relay that she broke the story. I appreciate the kind manner with which she did so and I'm mortified by my error. I read Osler's Web when it first came out and highly recommend doing so if you haven't already. More about Hillary Johnson and Osler's Web on her site here:]

Because it's important to understand how we got here, at a point where said illness was wrongfully either dismissed or underestimated until millions of lives were destroyed and an untold number of persons were dead, here's a truncated version in a 1999 Washington Post story, for free:

In 2000, then-CDC director Jeffrey Koplan had to apologize during a Congressional hearing because, twice in two years, the CDC got caught misappropriating funds Congress had earmarked for CFS [sic]. Seriously, what kind of fuck weasel bullshit venality is this:

I'll get to the failings of the NIH as I go here--others have written about all of this before, but I'm alarmed by how many persons with M.E. still don't know the history of the illness and how it came to be either derided or ignored by the medical establishment.

We're in a fight for our lives and information is power.

Day 4 of 365

#MyalgicEncephalomyelitis #MillionsMissing #pwme #cfsisamisnomer #Disability #CDC #NIH #ChronicIllness #oslersweb #hillaryjohnson

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Contrary to what the mainstream media and "anti-opioid" lobbyists would have you believe, legally prescribed opioid painkillers DO actually work for chronic pain. Opioids have been used for thousands of years to provide relief from pain, so why is there a mis-perception or inference in recent times they should only be used for acute pain?

In America the CDC Opioid Prescribing Guidelines state there is "insufficient evidence to determine long-term benefits of opioid therapy for chronic pain" [SEE LINK BELOW], and in Australia we are told there is a "lack of evidence for opioids in the management of chronic non-cancer pain" [i.e. based on the International Assoc. for the Study of Pain Policy Document February 2018].

Many anti-opioid activists claim there is “no evidence” or "insufficient evidence" opioids work long-term, yet there are NO high quality, placebo controlled studies routinely conducted for longer than 3 months. Therefore, to say there is no evidence is "a misleading statement, because non-opioid pain medications and alternative treatments are not studied for long periods either."

IF there are no reputable or "good studies" that go beyond 3 months [i.e. due to funding and other regulatory and scientific restrictions], surely the absence of evidence is NOT evidence of absence? There is a silent majority of responsible chronic pain patients, using their opioid pain killers safely and successfully for many years, yet their voice is not being heard.

#research #CDC #IASP #OpioidCrisis #PainManagement #Opioids #Painrelief #prescriptionopioids #Dontpunishpain #ChronicPain #PainManagement #OpioidEpidemic #OpioidCrisis #opioidtapering #forcetapering #Dependence #Addiction #opioidprescribingguidelines #OpioidHysteria #fearofopioids #opioidrestrictions #chronicpainpatients #deprescribingopioids #abandonment #untreatedpain #OpioidUseDisorder #SubstanceAbuse #PainKillers #StopTheStigma #Holisticcare #qualityoflife #noonesizefitsall

Study Finds Opioid Medication Effective for Chronic Pain — P...

Study Finds Opioid Medication Effective for Chronic Pain — Pain News Network

By Pat Anson, Editor Opioids have been used for thousands of years to provide relief from pain. But are they an effective treatment? Are they worth the risk of addiction? And do they improve quality of life? Millions of chronic pain patients who use prescription opioids so that they can work,
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3rd time's the charm (💉😷🙏🏻)

While it shouldn't have to be said, a friendly reminder that you never know someone's story just by looking at them.

When I went a couple weeks ago for my #COVID19 booster, the pharmacy tech said "nope, not giving it yet". I asked about the walk-in availability that I saw advertised on their site. She glanced up and said "no, only for seniors. Or those who are VERY ill." I explain that I have a chronic illnes making me high risk (immunocompromised) & that I've been aggressively treated for 2.5 yrs on meds that strip my immune system (for an unrelated mystery diagnosis). She looked me up & down. "I'll have to check with our pharmacist but I don't think we'd give it to you. What issue is it?"

"Primary Idiopathic Hypersomnia with long sleep time (IH-LST)."

[Blank look...]

"It's a rare & chronic neurological sleep disorder resulting in debilitating EDS (excessive daytime sleepiness) because my brain can't process any amount of sleep as restorative."

Even so, she pushed back. Said I wasn't eligible for booster until 8 months after my 2nd dose. Asked when I got the original vaccine & promptly said "no you didn't" when I told her I got my 1st in March. My vaccine card says otherwise 🤣 but she said "OK, well that's still not 8 months". I told her I read that the waiting period for high-risk individuals is just 28 days after 2nd dose. "No, I don't think we're doing that. Where did you read that?" I asked to chat to the pharmacist at that point to clarify because I read on both Walgreens & #CDC websites about the 28-day mark.

"Regardless, we may not have the proper brand." Obviously, I had checked availability by manufacturer so was nearly positive they had Pfizer in stock. I was again warned that boosters are limited supply. ONLY for those who NEED it. I reached in my purse to get my #RareDisease ID card. With a big *siiggh* she finally turned to find the pharmacist. Less than 4 minutes later, she came to administer my 3rd shot.

TL;DR >>> #Disability isn't always visible. An illness isn't less legitimate just because YOU haven't heard of it. The elderly aren't the only high-risk population. And Walgreens needs to educate their staff ASAP!

#IdiopathicHypersomnia #Advocacy #Spoonie


The #CDC Site for Public Comment on#Opioids

Just in case anyone wants to share their story regarding pain medication and how it has helped them, I've submitted a story to The Mighty explaining the situation. I have a link to help, but I cannot publish it here without going against community guidelines. To access the site, please Google search "beta regulations . gov" and "Management of Acute and Chronic Pain: Request for Comment". The deadline for public and stakeholder comment is June 16, 2020.

If you have #ChronicPainor #Intractablepain please consider submitting your comment. By and large, most government officials that I've spoken with do not know how many people are losing their pain battle because they aren't hearing from us directly. We need to speak up and soon.

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CDC Mental Health and Coping with Corona Virus I’ve provided this link to the CDC website to share with you all.

Today I had a panic attack because I hadn’t been feeling well for many days and now have a low grade fever. when anxiety rises I start to hyperventilate (not TV style) but in such a way I can’t get a full breath. I immediately thought about all the symptoms of Covid-19 and how a hard time breathing meant I needed to see a dr about it.

after I calmed down and got some rest I was visiting the website and found this area. it’s something you can link on your social media #COVID19 #Anxiety #CDC #agorophobia #feelingguilty #Stigma #coping

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You’ll never get their attention by being silent.

If you’re going to use your spoons, use them on raising hell about being ignored. #CDC says "There is no cure or approved treatment for myalgic encephalomyelitis/chronic fatigue syndrome #MECFS

Estimates on those afflicted are upwards of 2.4 million in the US and that's probably low since doctors refuse to diagnose it.


IC isn't being treated.

Too many women men and children are suffering from the dreadful disease called Interstitial Cystitis. The #DEA #FDA and #CDC opiate regulations have caused an oppression against us that is almost as bad as having IC. So many ICwarriors have committed suicide this year and daily I see thousands of people begging and pleading on our forums for help. I see people who are devastated physically, financially and emotionally because of IC and the dismissal by so many doctors of our pain. It's as if they look through us and we do not exist. It is time to stop the abuse of patients and demand that we are given ADEQUATE amounts of pain meds. Time to demand that we be recognized. Time to say NO MORE ill treatment by physicians. Especially amongst those of us who have gone through painful procedure after procedure, who have adhered to strict diets and supplement regiments, who have exhausted every resource to try and heal, who have been through years of pelvic floor therapy with little improvement. If they won't remove our bladders entirely then they better start giving us meds to make life liveable. #americanurologicalassociation #CDC #FDA #DEA