What differentiates ME/CFS from known primary mitochondrial diseases; could mitochondrial disease cause PEM?

Jonathan Edwards said:
I would also point out that charitable foundations built up around rare diseases quite often put out material that can be very misleading.

I realise that this is an issue that affects you personally but individual experiences are not a good basis for arguing what causes what. Unfortunately the literature in the public domain these days seems increasingly to be highly unreliable too.

Don't answer if you don't want to but I wondered whether you had a specific mitochondrial diagnosis? If so I will look it up specifically.
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The charitable foundations are not misleading - they are working closely with the national hospital for neurology for the majority of these studies. I can’t see anything misleading on any of their webpages. The same for the literature / scientific papers- it doesn’t make sense to say that everything there, is misleading too.

If you look back on my 2 or 3 posts, you’ll see that I purposely tried not to bring my personal experiences into it (except to say that everything I had read in scientific papers, & what I had experienced, said the opposite, & that doctors who look after patients will know symptoms better - and that’s not only about my case, that’s true for everyone). This is because I did not want to just discuss my personal situation here, but wanted to talk about the case studies from charities, case studies in papers, the NIH, research from other universities, and anecdotal reports / lived experiences from a Facebook group (in the same way that we would discuss the symptoms PwME anecdotally report). All of those had nothing to do with me. And when I read about the condition, there’s quite a lot of information out there.

The main thing is I did not want anyone to say - well you’re invested or biased because of your personal situation. And dismiss it because of that.

I don’t feel comfortable discussing further my situation, testing or anything else, in an area of the forum where it would get discussed or broken down in that way. I prefer to keep it to the support part of the forum when I have details I feel comfortable to share.
 
Fwiw, I had my (private) appointment with Professor Hanna last week. I was referred to him by a doctor for investigation of particular symptoms which I have (am not going to go into detail of my symptoms here though, as I don't want people who haven't examined me attempting to analyse my symptoms).

Here's an extract from the letter which I received from him today.

"I agreed that she does need further investigation for a muscle channelopathy or periodic paralysis. I run a national service for this on the NHS. We can arrange the appropriate tests on the NHS to include detailed neurophysiology to look for muscle membrane excitability, detailed genetic testing, and I would also do an MRI scan of her whole brain and spinal cord just as I would in any patient with fatigue of undetermined cause."

(I'm fairly sure the "just as I would" bit is referring just to the MRI. At least that's my impression based on our conversation.)

Edit: I should add: there are significant weirdnesses that I've developed over time, which means that my clinical presentation no longer looks like ME. I used to meet the diagnostic criteria but I in fact currently do not.
 
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