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@Jonathan Edwards I am confused. According to the reading I have done on acquired brain injury so far. Non-traumatic brain injury impairs the function of the brain due to its direct impact on cells throughout the brain. NTBI is acknowledged as a neurological condition and is, for the most part...

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 acceptance of research trying to prove it has a psychiatric component. However, the condition is removed from a guideline covering functional...

That's not good. I've been looking into ABI NTBI as our symptoms correlate remarkably. PEM, Hair loss, weight change, fatigue, altered sleep patterns and many more are all shared symptoms with ME and LC.

I think this is definitely one to keep an eye on. The wording looks like it has changed to Rehabilitation for Chronic Neurological Disorders, Including Acquired Brain Injury, which clarifies it includes brain injury caused by non-external forces such as infections, autoimmune conditions, etc.

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 are seen by the right people. Unfortunately, that's how it works in the U.K right now. Can I send you a PM? I'm trying to gather the names of the...

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 give it a go as they are supportive of my plight. I'll do my best to navigate it and complain where possible.

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. I told them the last clinic I attended did not dispense which was useless as my GP is not a specialist. The person on the call asked what kind of...

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 contribute something for informing the NHS about ME neurology before his departure? Other than that, it sounds like the blind leading the blind going...

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 about Managing symptoms. In the NICE guideline not only is it seriously lacking, it is also written haphazardly without clarity. You would think...

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 changed their approach, perhaps it was PACE and conflicts of interest.

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 inflammation in the basal ganglia of a deceased ME patient and assisted in developing the “purple book”. Excited that he was actually still...

Fatigue Syndrome but Neurasthenia when it's officially logged within NHS SNOMED. There is a problem in the clinics with the clinicians who are determined to reframe ME as a mental illness, block patients with ME having anything recorded explaining the physical aspect of the illness. I’m...

So CFS/ME patients are seen alongside those with what the NHS defines as somatisation and functional neurological disorders......... I found Dr Murphy was the same in terms of stopping physiotherapists from writing letters for social services and benefits. She also diagnoses CFS/ME patients...

That’s great to hear, but then it's disturbing to see NHS commissioned clinics overtly flouting the rules. Some websites may still require updating, but they've had long enough to prepare. The referral criteria I've seen also seems more stringent. All other possibilities, including psychiatric...

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 energy limits and relapses and flare-ups. But what I'm saying is clinics may still be able to advertise they offer GET as long as it's the NICE recommended...

If flexible activity/exercise programmes are allowed to be called GET, which the clinics offer to PWME, technically, they are providing NICE recommended GET as it’s the approach recommended. If the above is correct, it seems problematic as most people associate the term GET with the version...

The clinics are allowed to offer physical activity and exercise programmes but not GET, which only makes fixed incremental increases in the time spent being physically active. I think they can still provide GET when the approach is patient-centred, flexible and gradually increases the time spent...

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 key information disseminated about it, which follows.

Perhaps some see this as trivial, but it’s actually disrespectful. PEM is the symptom that causes profound disability.