Very hard for me to decipher as I'm also not sure if the pain and stiffness I have now progressed from the commonly reported ME/CFS muscle aches I...
I've recently been diagnosed with Polymyalgia Rheumatica. I'm seeking advice from others who have it or are familiar with the condition. I'd...
I don't think there can be so many of us with ME and LC who have never met in the past or present that can articulate the same thing without...
It would be great if DwME could facilitate change within NHS England. Let me know if I am missing something but isn't POTS a form of dysautonomia...
Prior to this discussion on the redefinition of "recovery." What you've said above were the exact thoughts I had during a COVID Recovery Clinic....
'Recovery' means tolerance of debilitating symptoms and deteriorating health. It's not right at all, and I think this needs to be heard somehow....
The more I hear about all this, the more confused I get.
Same experience too. My cognitive and sensory problems keep getting worse over the years as well. They are now so profound I can't ignore if there...
I have executive function problems too.
Some tests also used for brain testing are advised against in the 2007 guideline.
I'd like to hear such patients describe their experience of ME/CFS in detail.
First time hearing the terminology myself. Seems you are right, though. This means returning to the hospital-based LC covid services as they said...
Not sure where to post this, but the Long covid rehab clinic team advised all they can offer right now is self-management techniques to prevent...
The LC recovery team said 'recovery' doesn't mean recovery to previous health. When I queried what rehabilitation meant, I was provided with the...
Mine started after an acute viral infection, so I'm aware of the definite time. After infection recovery, my immediate notable symptoms were...
Strongly depends on what your symptoms are and the events that led to your illness. Let's say you have prominent cognitive/sensory impairments...
For some reason, the UCLH fatigue service may also reference Simon Wessley on the ME/CFS diagnosis letter they provide. Stating symptoms appear to...
There seems to be a common theme within the neuro department at the hospital that patients diagnosed with ME/CFS have a non-organic (conversion)...
I second all the above. As @lunarainbows said, you could get the ME diagnosis and discharge, but if you do one day want to explore proper neuro...
I recall the events now. I wasn't aware it was a mental health professional who was having the discussions. If this is the case, then it could...
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