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I have only an advise for next time: an advance patient's directive. I have it, and I explain in detail what can be done and what mustn't be done. (I also forbid psychological diagnosis and treatments.) I also warn about sueing those who don't comply. But I don't know how it is in other...

Another possibility: For the digestion (or conversion) of protein Vitamin B6 is needed. More protein intake, more Vitamin B6 is used. Maybe your friend has a B6 problem. The symptoms would fit. Low stomach acid was mentioned, and the possibility of more ammonium in the gut. In this case I...

That's something I experience, too. I have constant IBS problems, but when I feel overall worse I have more bloating and diarrhea and pain.

But TIA sounds serious. I have these "seizures" regularly (I realize it seems to come and go periodically, i.e. I had some months peace, now it's back again and worse than before), and the day after I don't feel worse, just 'normal-bad'. I want to try O2 next time I have a'seizure' (I have a...

Thank you, @Invisible Woman and @Forbin! Both sounds realistic in fact. I had thought about an exhaustion symptom, too, but a migraine type would also be possible. If it's exhaustion, why could it happen during sleep? In fact, it's not new, it started ca. 1.5 years ago (as other nice stuff; I...

Well, @Webdog, I didn't know that and this crashed some of my hope, too :( I am still so young... Ahhh, and here comes new hope, thank you @MeSci :)

Interesting, @erin, thank you!

No. Maybe I should ask my new GP about it. He seems to be more interested than anyone I met before.

Hi @erin, so your sore ankle got better? What is Ventrovex (couldn't find anything)?

Sorry I had to choose this dumb title, but since I don't know what it is...I chose that one. Does anybody experience this, too, or know what it is? Sometimes, I have a sudden 'weakness seizure'. Up until now it only happened at night; once, I woke up from deep sleep with this 'weakness'. (I...

Hi Sue, regarding your thyroid issues: I didn't improve with T4 intake alone, too. I convinced my doctor to give a try of an addition of T3. I have a conversion problem of ft4 to ft3, and I think this is not so uncommon. Before taking T3 I already took Selen for several years, and iodid for...

I have a burning elbow since today. (Well, it's not in the elbow.) It feels a bit like an open wound without the wound. Is this like the burning you mean? I don't know what it is. Maybe an inflammation (in the muscle or a nerve...)? Maybe an infection? I had a chronic inflammation of the...

I would welcome exactly that language. Wouldn't that be grand...:emoji_relieved: :emoji_zzz: The video is great, thanks @Valentijn! I think it speaks perfectly what it often feels like with this illness. And thank you all for talking about your experiences. Very interesting, very helpful.

@TiredSam, I absolutely agree with you! Very good decision.

Now that I read this thread https://www.s4me.info/index.php?threads/proposed-letter-to-nice.1629/page-3 where Graham and John present their letter to NICE, I wonder if collecting signatures as Graham is doing would be positive?

Maybe if this forum is used as "public pressure", maybe this would help additionally to writing to them?

As long as you want no money from the authorities, there'll be no problem. And if you have money for a private doctor, everything's fine.

They used a trick: Instead of calling it a mandatory guideline (which doctors MUST follow) they call it an 'optional' guideline. Therefore, you cannot sue them. As I understood a private person wrote to the Ärztekammer Nordrhein and scientifically analysed their guideline. At the same time, a...

You speak my heart :D

I don't get benefits. I have to go to court. If I didn't have family who helps, I wouldn't know what to do. I daresay I'm not the exception. So there's no 'tax wasting'. But I see what you want to say. There's a good article about that in this thread...