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Because there is no science proving any particular cause of ME/CFS. The starting point of science is observation. We have that, multiple people who’s clearly defined ‘ME’ (a disease of unknown causation) has markedly improved via surgery. Many of us feel better with our heads pulled on. (And...

The pattern on a SPECT scan for depression is specific and different to what’s found in ME/CFS, and is also different for PTSD, ADHD, etc. More research is required.

In general regarding hypovolemia, I’m aware it’s also a symptom of deconditioning. So it’s difficult to assess whether it’s causative or occurs as a consequence of the illness (my feeling is the latter). I have a vague recollection of reading that it may also be a compensatory mechanism, which...

There are mitochondrial/metabolic issues in the muscles though. They just werent a type previously known and able to be recognised. Eg poor microcirculation of oxygen, abnormal metabolism in the plasma, calcium ions abnormalities etc [I see this was established further down in the thread ]

This is very interesting in relation to the issues with muscle spasms, seizure like contractions and even the CCI issues recently illustrated by Jen Brea & Jeff... type 2 muscles stabilise the spine and are heavily dependant on mitochondrial function. My physio has commented that these slow...

It’s so frustrating... here he is basically acknowledging that ME isnt CFS... his whole BPS schtick was never designed for or directed at us. Shit really got out of hand and wasted 30 years of viable research time ‍♀️

That’s annoying, as the repeat day cpets are where the impairment becomes really obvious Do you have another link? This one is coming up with an error (local host can’t be reached)

Update. Application for access to the National Disability Scheme was finally approved and I was discharged at the end of January. The ambulance ride was horrific. It was 40 days in total. My sleep seems to be permenently broken, I can’t sleep more than 2-5hrs at a time. Spent the last 2 weeks in...

Hey guys. Day 22. Still here. Did a sodium chromoglycate trial last weekend, hoping it would stabilise my food reactions. Instead it put me in bad stomach pain and wiped me out for a week. Sleep HR data looked like awake data. Thursday a friend came to carry me to carry me to...

Hey everyone. Thanks again for your responses. Tonight is my tenth night here. The nurses are leaving me alone for the most part and some have stopped wearing perfume—I had a bad weekend last week with hours of pain, anxiety and crying and had to again very strongly advocate for myself, HR...

Hey guys. Thanks to Aaron for posting and thanks for your responses. Today I had a heated conversation with the nurse where I explained to her that not sleeping means deterioration to my condition for which there is no treatment, and that the end point is being tube fed, unable to talk and...