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I've just found out Long Covid patients are being treated at the sports medicine centres. You couldn't make this up.

Exactly, the theory doesn't add up. A lot of ME patients have participated in their own deterioration due to working, plus caring for themselves and family. That's motivation right there and activity. Deconditioning how? I was/am more active than my parents who've been driving everywhere for the...

Looks like what's going on to me. NHS Improvements even stated themselves if challenged on the grounds of ethics they can refer to the recommendations within the NICE guidelines. That's probably why when post covid neurological symptoms and Long Covid emerged as a result of this pandemic a...

Even worse than that is NICE is currently creating a brain injury guideline that includes FND. So far from what I've read, sequelae brain injury symptoms are not completely understood but are well recognised by neurology. However, psychiatry argues the cause are somatic/conversion disorder...

This is what I also meant about FND appearing to take over microscopic brain injury which causes impaired neurological functioning of the brain. The name FND confuses things even more like CFS/CF, etc.

Along with everyone else you have raised very important points. For now, I'd like to find out how patients with PEM are treated, which may indicate their level of understanding. I think PEM is likely different across various conditions, so I wouldn't be surprised if there really isn't a good...

In this case, the arm raising exercise isn't to do with the degradation of body parts. It's to do with a lowered anaerobic threshold (AT) associated with symptom exacerbation/condition trajectory deterioration, which is a theory said to be a present part of ME/CFS. Hence, some ME practitioners...

Defo want to find something that works. Admittedly it does sound similar to GET, but my specialist also suggests all activities to be done under a heart rate of 100, etc. So I'll compare techniques. I'll try to find out if what they offer is in line with my specialist's suggestions before...

That is what I was expecting to take place. But that's not the current feedback. I think the CGGs need to work out fatigue clinic service provision. In the meantime, I have been told by an ME expert that some patients can build up tolerance to physical activity but they must first be bought...

Me or my family will now investigate specialist sports medicine centres to gain insight about what happens there as that is where concussion treatment is delivered.

We must all have the same life! My GP can try roping in a specialist but given all this ‘it will take time’ talk from NICE, I’m not sure what’s to be expected. All I know is that I’m somehow deteriorating right now in real-time.

I'm hoping they will have a neurological approach instead of a biopsychosocial one and experience with similar conditions will help them interpret my needs. Plus it has been mentioned it is for severe patients which I am. if it's not helpful I'll discharge. My fatigue clinic experiences have...

It doesn't make sense for the guideline to be reviewed by the panel unless they overlooked significant higher costs than initially considered during development, but that comes across as sloppy on their part. Sure seems handy to be able to do that to large numbers of patients asserting their...

I spoke to a 'Specialist Rehab Medicine Service'. ME is classified as a neuro condition, so I opted to talk to a neuro-rehab service. I asked if the service accepts pwME. I was informed they provide services to patients with any neurological condition subject to CCG funding heavily influenced by...

So far, I understand that there are two types of injury: visible structural damage and non-visible cellular structural damage. The non-visible damage causes dysfunction and neurological symptoms as well. If the non-visible kind cannot be easily seen and has not been ruled out, can we be sure it...

There are also reported cases of COVID 19 causing ABI. This could be another reason why ME and LC appear similar. https://thejcn.com/DOIx.php?id=10.3988/jcn.2022.18.2.194 I found that journal in the NICE evidence search. Type in 'MYALGIC' and a lot of resources will come up mainly from the...

Royal Free Hospital fatigue clinic now includes the term Myalgic Encephalopathy (ME) which is said to be a better name. https://www.royalfree.nhs.uk/services/services-a-z/fatigue-service/ Encephalopathy means brain disease, disorder, or damage. It is an Acquired Brain Injury. Encephalitis is...

I think there may be a few conditions which are like fibromyalgia. Coincidently, I came across a medical article yesterday morning about a patient diagnosed with fibromyalgia getting rediagnosed with centralised pain secondary to TBI by an Internist Pain Specialist Doctor. I actually know...

It will be interesting to find out. Brain injury patients are a mixed cohort as there are several causes. Plus, location, severity and type of injury will most likely influence further conditions and symptoms caused by injury. Would you consider your swollen glands more of a flare-up if it...

Thanks for creating this thread @Hutan I have quite a lot to say about the similarities, and it's great to have a dedicated place for everyone to share their views.