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Nighttime seizures would be my best bet.

It would be interesting to compare diseases and their related post exertional symptoms, markers of inflammation and gene expression, just to name a few. in general, heart failure and strokes would be an exclusion to get a ME diagnosis. Post concussion present some interesting dynamics that can...

Hi Anna, if you email the main author and ask kindly you may obtain that information that you want.

i have no doubt that it can be happening, but i wonder whether this is unique to our disease or whether it also occurs in other chronic diseases?

The De Paul questionnaire assesses frequency and severity of symptoms. i would recommend staying well away from Chalder fatigue score.

Thank you @mango Her message seems to be ‘buy my books’, I will get you better if you do everything i say, and if you don’t get better that’s your own fault. Of course her books are not peer-reviewed.

To get back to the % of people who were still undiagnosed, consideration must be given to physicians who choose not to diagnose their patients with ME due to the stigma and the fact that the diagnosis is based on reported symptoms. I have encountered comments from patients in Facebook POTS...

Can I roll my eyes? :angelic:This very much resembles the ‘acceptance and commitment’ therapy...

Re: increased intestinal permeability—> we are not sure as of yet. How to prove this? re : increased zonulin —> Who knew to test you for that? Or is it one of those test where you send your blood to a lab without going through a MD? Lastly, I agree with your third statement, but again we do...

@Snowdrop you are missing the point. You can have a butler and a maid, have someone cook you nutritious meals, follow X,Y,Z guru’s diet, and you can still be severely sick with ME. Do you ever consider that food may not be the problem?

If ME was a dietary issue, we’d be all recovered and back to our lives. Give me a break! (Not you, @TheBassist )

I really wish it was their reasoning as well, but seemingly they postulate that the mental status causes the patient to create pain all by itself and by changing their psyche, they can alter the perception of pain. A character flaw if you will. From my own experience of pain, some of the time i...

How could stem cells target specifically exosomes? It does not make sense. Using place ta stem cells from someone else involves risks, the first one is peripartum infection, including physical handling of the placenta which is often done using non sterile gloves. The mother may carry infection...

It’s been used for years in the alternative medicine, with or without expertise needed. Think about Cheney’s patients who went to Costa Rica, some of them more than once, at 20K a pop, for stem cell treatments? There has been a few patients who blogged their treatment plans for stem cell...

An elderly family member has had a knee replacement as of late, and before that, he had to go down the stairs backwards. He was truly bone on bone. Getting up from sitting was also excruciating. i despise the use of catastrophizing terminology and its use in research to imply that patients are...

Be careful out there! View article here

Facebook ads can be a good way to reach a wider audience, and you can determine who will see this ad, for instance, only people of UK, over the age of 18. It costs a bit of money, but with judicious timing and message, you could recruit outside of the usual circles. Same with google ads.

I do not think it is part of the ‘success’. For millions afflicted, there are only a few clinicians practicing knowledgeable enough to discuss clinical aspects of the disease without mentioning psycho-social factors. Half of these physicians will retire or are past retirement. Universities do...

Thank you for clarifying @Sarah94

In the case of my ipad, it loses its power much faster when it goes below 10%. It is not a perfect model considering everyone’s symptoms are different, however it explains the energy levels patients function at. I would be careful to compare ‘mild’ ME to ‘severe’ ME. By definition everyone has...