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I think of Anne quite often, and of her Mum (whom I saw in the photos). I hope the family are managing after such heartbreak. How can it be that the governments of various western nations do not fund the research more generously. It is young people whose lives are destroyed with this illness.

You are so correct with all your points. I am getting to the point now where I am trying to avoid the term CFS, chronic fatigue syndrome. A normal healthy person just thinks ME folks are 'tired.' One doctor said to our family member: you should see how tired I am! This was when we needed to go...

https://www.cbc.ca/news/canada/british-columbia/fake-doctor-lipjob-botox-1.4910093 well, just to keep up with the UK, our Canadian news is now full of our own fake doctor.

I have not been able to watch the talk, but on the basis of the comments here it does not sound as if this talk advanced things. I must admit that I am desperately discouraged these days that the research has not yet yielded what’s required to give folks an acceptable life. I had hoped the...

What Hip writes is indeed accurate. I’m not trying to start a digression, but this evening I heard on the CBC that the polio- like symptoms children are getting now in the USA and Canada are likely linked to Enterovirus.

Thank you. I am not sure your daughter has already had all these tests, but that’s an awful lot of blood to take in one shot. Our family member could not withstand this much blood taken. You could consider dividing the testing in order to spare her suffering. I’d be very anxious to hear about...

Thank you for posting. Has your daughter ever been tested before? Or is this the first ME physician she is seeing. Thank you.

Dr Kerr is a most decent kind man. Years back I just rang him up, desperate mother that I am. He picked up the telephone himself. I guess I hit on the correct extension. When I described the situation he extended so much delicacy and empathy. I will never forget the call.

Thank you Milo for pointing out what happens in our medical system in Canada. The main focus when one is at the doctor’s office or in hospital is to reduce costs. Thus, tests are not ordered, investigations rarely initiated, particularly anything out of the norm. Milo is correct: No test, and...

I recall years ago mentioning ME to my GP. I didn’t mention then that our dearest family member has it. I knew there was huge stigma. I simply asked what she knew and thought about this illness. Her response ( my paraphrase); these people can’t cope, they just can’t cope with life I left the...

Thank you for this hard work done pro bono. Thank you. How would one even treat liver fibrosis? I mean aside from transplant. Is it even possible. Very worrisome problem....

Sasha, Fabulous question, indeed.

In Montreal, Dr Carmen S said it would be 5 years before they had anything. This is too long for many people in the very severe category. I hope this gifted physician is wrong on that one!

You see she hemorrhaged, and her hemoglobin would drop very low, 6 or 7, and when she received the blood day after day, she would improve. Then this better state remained, and she would come home with it, but then after two or three weeks, various symptoms started returning day after day, one...

He is also one of the most decent and kind researchers I have ever come across.

My daughter had many units of blood given to her, perhaps a total 30 or more units of blood. She always felt a little better (not normal but better) after transfusion, but about 2 weeks after, the old ME resurfaced.

I have to tell you the truth, but my daughter went to bed one night not sick, and woke up the next morning very sick, thinking it was the flu, but it was ME. Thus far, this wretched nightmare has not abated.

Great information. Thanks. Our family member was on Cipro for clostridium Difficile, and then this death-in-life ME set in. Shouldn't drugs like that be prescribed more cautiously, I have to ask.

Dear Dr Edwards, So what would it mean if in a stomach biopsy test for enterovirus came out positive. And the patient had constant GI and digestive distress, in addition to the regular ME symptoms, but the tissue did not look abnormal. We had sent a stomach biopsy slide to Dr Chia and he said...

Forbin, Are you saying this GWI trial is beginning in March? I thought it was already begun in Dec 2017 (at least from her other video). Klimas' had a sister with ME who died, I'm not certain of what causes.