I ordered a hardback copy of the "The Clinical and Scientific Basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome", which just arrived in the post. It should probably come with a warning - Carrying around or even just reading a 4.25 lb book with 724 pages counts as significant exercise for anyone with ME or Long Covid 😂. It's a massive book and looks like it will make interesting reading, even if just for historical curiosity.
The Nightingale foundation holds a special place in my heart because on 12/24/09 I got sick with a terrible flu that began with a bizarre heaviness/weakness in my legs. I never recovered & instead began developing a textbook case of ME (*see symptoms below)! The problem was,despite being an RN for 30 years, I’d never heard of it & neither had any of the specialists or my primary care doctor in the Kaiser medical system! So we spent two years trying to sort out what I was dying from! How could anyone be so sick for so long without finding a diagnosis?! Through my online research, I came across the Nightingale foundation, & exclaimed OMG I have been describing a textbook case of ME so I’m not the only person this has ever happened to!!! Prior to that flu, I was incredibly athletic (road bicycling 200 miles weekly & mt biking too, living in San Diego! Snow skiing, SCUBA diving, gym, workouts, running, rafting, rollerskating, etc.) I’d worked full-time as an RN until I turned 51 y/o when this happened!! I’d hate to think of this source not being available to someone like myself trying to figure out why they are so sick and can’t get well!
Here are a few of the symptoms I began experiencing after my severe flu, continued to persist for over 6–8 weeks!! There were so many, but it began with I can’t think right anymore(severe forgetfulness, (forgetting water turned on in the spa for three days, boiling pans dry on the stove, medical appointments, etc. word finding difficulty, inability to follow a tv show or movie or do math to balance my checkbook!), aching pain from my bones outward-that made me consider Suicide daily- just to get out of my body, not because I wanted to be dead! A chronic sore throat with red crescents that lasted for 12 years, painful photophobia, profuse sweats, cold hands & feet with new onset Reynaud’s, & severe migraines, loss of appetite, aversions to meat & alcohol, reversed circadian rhythm & increased sleep of 11-14 hrs. (For last 3yrs I’m awake 32 hours- ie. from 6 PM until 2 AM, then sleep for 16 hours from 2AM to 6pm. So essentially losing every other dayof being available during business hours!) POTS & so many other symptoms confining me to bed or a recliner 90% of the time – still up for toileting & to get a bath 2 times weekly!
God bless all of those who work in behalf of this patient population!
Thank-you Colleen. Dr. Hyde's work must be preserved and built upon. I'm doing what I can on my end of things, as my health allows.
Many thanks to you, and to Wendy, Shera, John, Guido, and others, for what they are doing to continue the FB page and to keep all of Dr. Hyde's writings available and accessible.
Thanks for the info.
I do hope there are some unofficial backups of this key information.
I ordered a hardback copy of the "The Clinical and Scientific Basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome", which just arrived in the post. It should probably come with a warning - Carrying around or even just reading a 4.25 lb book with 724 pages counts as significant exercise for anyone with ME or Long Covid 😂. It's a massive book and looks like it will make interesting reading, even if just for historical curiosity.
Glad to hear the book arrived! It is heavy...
Is this any use:
https://archive.org/details/clinicalscientif0000unse
Thank you! I have edited the article to include that link.
The Nightingale foundation holds a special place in my heart because on 12/24/09 I got sick with a terrible flu that began with a bizarre heaviness/weakness in my legs. I never recovered & instead began developing a textbook case of ME (*see symptoms below)! The problem was,despite being an RN for 30 years, I’d never heard of it & neither had any of the specialists or my primary care doctor in the Kaiser medical system! So we spent two years trying to sort out what I was dying from! How could anyone be so sick for so long without finding a diagnosis?! Through my online research, I came across the Nightingale foundation, & exclaimed OMG I have been describing a textbook case of ME so I’m not the only person this has ever happened to!!! Prior to that flu, I was incredibly athletic (road bicycling 200 miles weekly & mt biking too, living in San Diego! Snow skiing, SCUBA diving, gym, workouts, running, rafting, rollerskating, etc.) I’d worked full-time as an RN until I turned 51 y/o when this happened!! I’d hate to think of this source not being available to someone like myself trying to figure out why they are so sick and can’t get well!
Here are a few of the symptoms I began experiencing after my severe flu, continued to persist for over 6–8 weeks!! There were so many, but it began with I can’t think right anymore(severe forgetfulness, (forgetting water turned on in the spa for three days, boiling pans dry on the stove, medical appointments, etc. word finding difficulty, inability to follow a tv show or movie or do math to balance my checkbook!), aching pain from my bones outward-that made me consider Suicide daily- just to get out of my body, not because I wanted to be dead! A chronic sore throat with red crescents that lasted for 12 years, painful photophobia, profuse sweats, cold hands & feet with new onset Reynaud’s, & severe migraines, loss of appetite, aversions to meat & alcohol, reversed circadian rhythm & increased sleep of 11-14 hrs. (For last 3yrs I’m awake 32 hours- ie. from 6 PM until 2 AM, then sleep for 16 hours from 2AM to 6pm. So essentially losing every other dayof being available during business hours!) POTS & so many other symptoms confining me to bed or a recliner 90% of the time – still up for toileting & to get a bath 2 times weekly!
God bless all of those who work in behalf of this patient population!
Nightingale Foundation helped (still helps) a lot of us. Thank you for sharing your experience.
Thank-you Colleen. Dr. Hyde's work must be preserved and built upon. I'm doing what I can on my end of things, as my health allows.
Many thanks to you, and to Wendy, Shera, John, Guido, and others, for what they are doing to continue the FB page and to keep all of Dr. Hyde's writings available and accessible.