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I don't know how to encourage Jen to return, however, this has been a very stimulating and informative discussion. It was very useful to read the various views on this utterly gripping story. Is there any way to restore things?

@JenB Dear Jen, For all our sakes, patients and parents, would you consider approaching Dr Davis and asking him to do the stress test on you, even now. He has found it to be positive in the severely ill. Too bad you did not do it earlier but I know it was for those in the research. Your...

Dear Jen, The important outcome is that a) you are restored, B) you are recounting what happened, but what is now even more important is to get neurologists and ME researchers together asap to evaluate the results that you and Jeff and Mattie and others are living. This disease is horrific...

Everything you say, Dr Edwards, is quite true. And many of the drugs given to ME patients spike up the system, and the person is revved up like Michael Jackson, only to crash horrifically once they try to do a bit more, with the false sense of energy. The problem as you know is that this illness...

I thank Jen for all her heartfelt and intelligent writing. Thank you Jen. Is it possible that after the thyroid surgery, and having her head bent back like that during the procedure, the symptoms could have started to appear? It could have been a weak spot in her body, and then bending her...

There is also the Chornobyl accident just outside of Kyiv in Ukraine. Wouldn't there be lots of ME as a result? From what I know there are lots and lots of cancers. The article does mention the nuclear accident, but with a vague reference to folks getting chronic fatigue syndrome. NO statistics...

Is this a procedure that grew out of the need for the Ehlers Danlos patients? Accident victims also, for sure. But why is it "controversial?"

Since folks are bringing up Unrest, all I can say is that when I viewed it, I found it to present the most accurate picture of Me that I have ever seen: the collapsing for no reason, the twitching, the sickness, the weakness, etc. As I said earlier, and as Doka pointed out, it looks like these...

All this talk, really makes me keep asking: is ME perhaps an end point: and that folks have other problems in their bodies: and then their bodies give out as it were, or do not completely give out for the milder cases. I just don't know what to think anymore. Some take antivirals and get...

Can't seem to get the whole article, just the abstract.

Many decades ago, DR Teitelbaum, in his book: From Fatigued to Fantastic, did raise the point that the ME could be due to CCI or tethered cord. So, it has been known amongst the early CFS doctors. I am not sure what to think of all this. Is ME / CFS just an end point? And is it due to some...

Dear RVallee: your comment is very apt. The humiliation that patients suffer is horrible for me to observe. I recall we had to go to the ER to get help with a blocked pic line. When we told the doctor our family member had ME/CFS and was bed bound. He said to her: "just try to do more exercise...

Thanks for the details. Yes, you are correct. But remember how we were all shook up by AIDS. I will never forget Nureyev being held up by two chaps on either side of him. Things like that really had an impact and imparted fear. In the case of ME, the disease has been so mocked, so disparaged, so...

In this media age, I guess more alarming photos are needed. There are so many severe case and of course, it is not clear if they would allow media into the house. But, alas, in this day and age, this gets attention.

There were two points about the article that were absent: the number of people affected, and secondly--stating that some people work in offices and still have the disease. The first point would have highlighted how large a problem this is. The second point--is bizarre in my view. I don't know a...

Thanks for posting; and now the obvious question: how is it that the world is not galvanised enough to realise that this is an emergency; and that there are thousands upon thousands of people in this severe state.

Dear Chris, I am in "that sort of mood" non stop; it is the underlying problem we need addressed asap; and things are just not moving along at the speed required. And that sadly is human nature...

Dear Willow, You are correct: who more than patients and their caregivers can give insight to what this illness does, and how to best cope with it. That said, I don't think I'm wrong, however, in saying that I wish instead there was more "sufficient medical research" instead of anything else. I...

The sleep discussion is interesting. Our family member had a sleep study done in a lab with a specialist. He determined that she kept waking for microseconds constantly and with great swift regularity (can't recall now the frequency; would have to check on results). He also determined some...

Yes, they do push the envelope, and I should think that researchers could use these examples to help them figure out what is happening here. Many of us are desperate for treatments, severe patients are in utter misery and often try self harm because there is no relief for them. Here in Cda, the...