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USA residents: Opinion: It's Your Right To See Your Medical Records. It Shouldn't Be This Hard To Do https://www.npr.org/sections/health-shots/2019/08/28/754725843/opinion-its-your-right-to-see-your-medical-records-it-shouldn-t-be-this-hard-to- See the rest of the article here...

I'm curious about how you submerge your head in ice water. :confused:

In the US it also varies state-by-state; some states require one-person consent (usually the person doing the recording) or two-person consent. https://www.justia.com/50-state-surveys/recording-phone-calls-and-conversations/

Because people (patients) are machines; our brains and intuition and thoughts aren't to be trusted. Emotions n stuff.:banghead::arghh: If it fits neatly into an algorithm, by god, that's where it's going to stay (GET, etc.)

I've submitted Addendums to my medical record numerous times, mostly for specialist visits. Here are the guidelines for correcting medical records in the USA: https://www.thedoctors.com/articles/requests-to-amend-a-medical-record/ A doctor can also create an addendum. I emailed a doctor who...

FDA Requires New Warning On MRI 'Dyes' That Chuck Norris Says Poisoned His Wife December 26, 2017 https://www.forbes.com/sites/ritarubin/2017/12/26/fda-requires-new-warning-on-mri-dyes-that-chuck-norris-says-poisoned-his-wife/#2dac64578042 Chuck Norris claims his wife was poisoned during MRI...

Early on in my illness I went to one acupuncturist one day a week in the evening for about 12 weeks. The following day I would have enough energy to complete errands like shopping and whatnot. Then the following day I would fall back to my baseline. I had my one 100% remission that lasted two...

From the article we're discussing: Reference #54, quoting his earlier work: White PD, Rickards H, Zeman AZJ. Time to end the distinction between mental and neurological illnesses. BMJ. 2012;344(may24 1): e3454. Full text (PDF): http://sci-hub.tw/10.1136/bmj.e3454 :emoji_warning:Well that's...

After being sick for 28 years this is more or less how I manage. Using heart rate monitors never appealed to me; even Lucinda Bateman recommends that people try to do their best without monitors and learn to recognize when they need to slow down. The only thing that might be possible to do -...

MS has his say - gosh, really?

I agree that the concept of a baseline is a myth. When I wake up I don't know how many "spoons" I will have that day - maybe 5, maybe 1. And sometimes the spoons I thought I would have that day disappear mid-day. Dr. Lucinda Bateman I think described energy management and pacing as trying to...

Great work! Just wanted to let you know that at 4:50, Dr. Paul Cheyney is not the correct spelling. His name is Cheney.

Their definition of CFS isn't even close to any the definitions we use: It's the same misuse of the term CFS when applied to mice that are forced to swim to exhaustion. This study is about sleep disruption leading to poor school attendance leading to "school refusal behavior" that is given the...

Kutapressin was being discussed in 1994: https://www.prohealth.com/library/current-drug-treatment-trends-in-chronic-fatigue-syndrome-11381 The two articles in 1994 were: Kutapressin Inhibits in vitro Infection of Human Herpesvirus Type 6 D. V. Ablashi, Z. Berneman, C. Lawyer and A. Komaroff...

Reading this made me angry.:mad:

From the Vox article above: Unpaywall: 4.5 star rating on Chrome Web Store 204,896 users on Chrome and Firefox

A lot of patients with Erythromelalgia don't have the redness, myself included. There was a survey of several hundred patients that confirmed this. There are two things that distinguish EM: 1. Pain is worse at night. 2. Pain is worse during warm weather.

I think the reason one person may respond to one medication for neuropathy and another person won't may be due to the cause of the neuropathy, i.e. diabetic neuropathy vs. traumatic neuropathy from an injury, etc., or erythromelalgia (that feels like a neuropathy). For a neuropathy in one leg...

Were you thinking of this one? Mitochondrial DNA variants correlate with symptoms in myalgic encephalomyelitis/chronic fatigue syndrome (2016) Maureen Hanson et al, Cornell University https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-016-0771-6 According to 23andme I...