Search results

This is truly one of the scandals of pain research. If they want to, there are objective measures available such as blinded actigraphs. They simply have no interest in objective markers.

Yes. @Jonathan Edwards has mentioned in his skepticism of the use of saline as a treatment to build blood volume that saline would simply make people pee. That was clearly the reason the ER used it for me.

As always, this is N=1, so take it for what it’s worth, but a few thoughts: I was diagnosed with ME/CFS in 2002. In 2006 I presented to the ER with severe upper left abdominal pain that was eventually diagnosed as multiple pulmonary emboli. I had no hx of international travel, surgery, DVT, or...

I actually won my disability appeal in 2003 based on my neurocognitive testing, which was the only "objective" evidence of impairment I had at the time. When I applied for disability in Sept 2001, I was immediately referred by Social Security to a psychologist for said testing as is standard for...

My partner's response to your comment was "so everyone's a winner; patients now only suffer through 2 hours of B***S*** instead of 16 and Darnell et al. make loads of money on Zoom calls!"

Just a little but exciting follow up to this thread: Hippocampus nominated this essay for a Pushcart Prize! Outside of the literary world, the Pushcart Prize is not well known, but within the field, it's sorta a big deal. It works a bit differently than "a" prize as it's actually about being...

Beth Darnell is an interesting one. She actually does advocate NOT tapering pain patients off of opioids. In 2017 when my state of Oregon was wanting to pass a chronic pain guideline similar to that in the UK (limited meds--especially no opioids, but plenty of acupuncture and CBT!), Darnell...

I'm on a fairly high level of levothyroxine atm (100mg/day) and I'm really ambivalent about it. I've never seen any improvement in my symptoms when we've increased it. It feels almost like we're treating a lab result rather function. But yeah, about the time I started feeling that strange "lack...

Has anybody seen any studies on reduced nocturnal blood pressure in ME/CFS? When I click on that link, it simply takes me to a Science Direct topic discussing cardiovascular malfunctions. And what would be considered nocturnal hypotension given that blood pressure should drop during sleep? The...

This. I've been thinking this very thing as we've all been going on about NICE guidelines. While it sounds like NICE have done the right thing with regard to ME/CFS, they clearly did a piss poor job when it came to chronic pain.

I think Andrew Goddard's remarks as well as Alaistar Miller's on Radio 4 just amply demonstrated that Foucault's concept of the medical gaze was spot on.

I agree that CBT is more practical (and why I found it more helpful than psychotherapy). But while they may borrow the outward forms and language of science, I don't know that it really is. I mean, is yoga science? We might use science to try (though mostly unsuccessfully) to study yoga, but...

Just a point of pedantry on my part: it started as a blog/website in 2003 but the forum did not begin until 2009.

How would you define "active" members? I read every day but rarely comment as I'm too ill. I feel pretty damn active but the number of my posts after nearly four years of daily visits is not very high. I think Andy's right to not try and parse "active." It does leave out a lot of people who are...

I've always thought that psychotherapy is far closer to literary analysis than it is medicine. Now, I do enjoy me some good lit crit--both intellectually and emotionally/spiritually--as I have good therapy (and I actually have had good CBT). But it ain't science and should never be the basis for...

Alas, no. Indeed nobody even mentioned the possibility of blood clots until I was leaving the hospital and a nurse handed me a brochure saying, "oh if your leg hurts, let us know because it might be a blood clot." Which, since they had just done surgery on both my knee and ankle, my whole damn...

I had arthroscopic surgery on my right knee -- specifically a lateral release and debridement. It was worse than useless. Not only did I develop deep vein thrombosis and pulmonary embolism (blood clots in the leg and lungs), but I was in worse pain following the surgery. When my dolt of an...

responding to this post Or this by @sTeamTraen which also suggests a few...er, problems with the big Ivermectin study.

Just got the Johnson&Johnson vaccine on Thursday. No side effects, not even a sore arm*. I have severe ME/CFS. The last time I got a vaccine -- the DTAP-- was in 2011, and it did elicit a marked flu-like response (fever, malaise, etc.) that lasted for a few days. Since then I have declined to...

Medscape: Pandemic Boosts Care for Serious Illnesses at Home Yet another silver-lining of COVID for those of use with ME/CFS? I already get primary care in my own home (including blood draws) and have even been able to get an ultrasound in my bedroom. But to be able to avoid hospital stays in...