Yes, I thought that was strange and was going to mention it. On the one hand, some argue ME/CFS is a functional disorder, and there is overall...
That's not good. I've been looking into ABI NTBI as our symptoms correlate remarkably. PEM, Hair loss, weight change, fatigue, altered sleep...
I think this is definitely one to keep an eye on. The wording looks like it has changed to Rehabilitation for Chronic Neurological Disorders,...
Did the manager or your GP recommend a referral to the brain charity? There is a whole plethora of secondary care medical help for brain conditions.
Thanks, @lunarainbows You've hit the nail on the head. Some people receive help with symptoms once they have jumped through the correct hoops and...
I know...... Luckily, my GP has agreed that is all they can say about ME/CFS and Fibromyalgia as it is defined as neurological on SNOMED. I will...
I decided to call a well-known fatigue clinic to ask how I can find out which fatigue clinics dispense medication for patient symptom management....
Sounds more like it! I doubt CS and the MEA are aware. They weren’t aware of Dr Findley. Maybe we can ask the MEA if they can request him to...
I haven't read the DWME broucher yet and only came across the MEAs ‘summary’ last night. The one thing I found helpful in the summary is the part...
It doesn't add up as there are really good reviews about him but the most recent are poor. I found the same with Dr Murphy. Something must of...
I feared this would happen when I booked myself to see him privately earlier last year. I was very keen on seeing him when I found out he found...
Fatigue Syndrome but Neurasthenia when it's officially logged within NHS SNOMED. There is a problem in the clinics with the clinicians who are...
So CFS/ME patients are seen alongside those with what the NHS defines as somatisation and functional neurological disorders......... I found Dr...
That’s great to hear, but then it's disturbing to see NHS commissioned clinics overtly flouting the rules. Some websites may still require...
Sorry I wasn't clear. That's what I meant by being flexible. The activity level is to be adjusted up or down while considering the patient's...
If flexible activity/exercise programmes are allowed to be called GET, which the clinics offer to PWME, technically, they are providing NICE...
The clinics are allowed to offer physical activity and exercise programmes but not GET, which only makes fixed incremental increases in the time...
I feel as though, just as people were busy trying to meddle with the evidence base for the new guideline, they're probably busy influencing the...
Perhaps some see this as trivial, but it’s actually disrespectful. PEM is the symptom that causes profound disability.
True. One thing I'm very good at is being able to disagree. I'm constantly telling doctors no when the things they say do not resonate well...
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