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I am not at all disturbed about what he wrote. Not at all. None. He is allowed his disease experience and he doesn't have to frame his disease experience exactly how you experience it. He probably took backlash for what he wrote from patients that can't let anyone have thoughts or experiences...

Lots of cold water from the fridge and a tiny bit of gatorade in each big glass.

Found where Michael Sharpe likened ME/CFS patients to climate change deniers.

Michael Sharpe Tweeted this out. Well, the professor doesn't mention PACE trial deniers, but we all know what he is really up to. :sneaky: Afterall, PACE trial critics were compared to flatearthers, anti-vaxxers, and climate change denialists. However, note Robert McMullen's tweet and how it...

I don't even believe they have a biomarker. Most researchers in the US have remained pretty quiet although I do remember someone in the research field saying something to the effect that they don't have too much faith in what they have "found".

I don't crash anymore but it has happened on several occasions about 10 years ago during a period of about 5 years when I was in bed a lot but not bedridden. PEM is what I went through for about 25 years and then during that 5 years I could crash but not all the time. Things had to be bad for...

I checked the UK site and I do not recognize any of the reviewer names. The US site has no reviews. Reading the author's statements as being a severe ME patient and "recovery" warrants the caution you are exhibiting. Even if she is a severe patient and has overcome hurdles like Jen Brea has...

It messed me up. Weight gain, temperament, breakouts, and there are a lot of conflicts with other drugs. However, my BP was 80/50 and just sat there, so to bring my BP up they did not have much choice. Unless one really needs it, I don't recommend it.

Comment by Richard Senior in 2006 "Not, sadly, the first." See the Editor’s note: The original version of this story stated that the UK case was apparently the first in the world. Our thanks to all the readers who pointed out earlier cases in the US and Australia. Perhaps they have been...

There is a man who spoke up in the comment section in one of the papers that his wife also died of ME. I will see if I can find it.

It took me a while to take it but I just took breaks and lied down to rest. I am cognitively spent today.

Also, one last thing. If we change PEM now, how do we get EVERYONE IN THE WORLD to adopt it especially without the bio evidence we need. We have some evidence, but it isn't enough. The government healthcare system, insurance companies, criteria for the disease(s), the medical practice in...

I think we go into the disease further but your experience explains what you are saying, a constant state of PEM.

I think of a crash as what happens on an ER table, a patient begins to crash. The crash can subside but then the patient can be driven into the condition that brought them to the ER even further and the crash can injure the patient in other ways; the heart, brain, etc.

The crash was much more severe, that is for sure. I worked for 20 years with ME/CFS and then when I began crashing I eventually became disabled. With enough rest I was able to get back to PEM/PERelapse but still disabled as I believe once you begin crashing you are causing injury to and whatever...

I think this is the most correct definition. I did crash for about 12 years and had PEM or PERelapse for about 20 years before that. I don't crash anymore and I am back to PEM/R.

I didn't crash for 20 years and even though I did crash for about 12 years after that I don't crash anymore. The crash is something more severe and and i think it will someday be its own symtom that helps define the severity of the disease.

That is true and that is where common sense needs to come in. Yes, it is unlikely that you acquired two seperate conditions in one day. Key is usually the onset. Although that can be a tangle also. I believe Fibro is a seperate condition mainly due to onset and the lack of PEM. I never had PEM...

Also, I have heard of people's doctors not checking their D levels and diagnosing them with Fibro. They eventually had their D checked by another doctor, went on D supplements and the pain went away. Fibro, it isn't just pain. Like ME/CFS, it isn't just fatigue.

lol No, it isn't you. I read your post here but I wrote an e-mail instead. Sorry. I am confused too. : ) I should have written: I saw your POST so I resent MY E-MAIL and this time it went through.