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No, not yet:) this week has been crazy, with buying a house and seeing a neurologist, some issues after the biopsy last week and now negotiating with realtors for the sale of my apartment. I’ll set one up later today if I can manage!

Hm, maybe it’s the folate that has helped my headaches? I started taking methylfolate a short time before they lessened. I have high folate levels now and stopped taking it, that could be why I just had my first attack in months a few days ago. Will keep an eye on this, thanks! She sent me a...

I finally saw the neurologist yesterday. She was nice and professional, took me seriously and seemed to respect my own knowledge and research. Not bad. We agreed that the object of the evaluation should be to rule out any missed conditions or comorbidities. All responses were normal, except...

How are you getting on, @Dechi ? Only a few weeks left before the move if I remember correctly:) We bought a house yesterday, so I’ll be reviewing all the helpful tips I got in this thread and start planning. :D:scream: We were going to spend at least six months looking before we bought, so...

I’ve never been able to tolerate noice cancelling headphones for more than a few minutes, they make my ears itch and my head go all buzzy like it’s crawling with ants:wtf: Luckily I’m not overly sound sensitive so I manage with molded earplugs most of the time. Used ear defenders on top back...

Congratulations, @JaimeS this is great!

:(

I meant they will probably refer you without much fuss. Sorry if I was unclear :)

A differential diagnosis thread maybe?

@Arnie Pye have you been given a gastroscopy? Might be more relevant to your issues than endoscopy and could probably be arranged by your GP (if you can get there?) The pain from acidic supplements reminds me of when I had an inflamed esophagus. Anything that affected my stomach acid levels...

If cyclo works, hopefully they will be able to look more closely at why it works, and potentially find other alternatives that can have the same effect but not as severe side effects. I hope cyclo works if it can bring us closer to an answer, but I hope my health won’t depend on taking it for...

Right. I wasn't aware the criteria were that strict! And they stills end a big portion away because of new diagnosis?

Sounds weird, PwME are usually very eager to participate if they can (is my impression). What criteria do they use? And could it be that many have comorbidities, rather than not having ME? What is it they look for that no other doctors or researchers have been able to uncover?

Judging by Emma’s tweets, this was Kristian Sommerfelt, the pediatric neurologist. This was a case study on a 56 year old female who had a complete remission of all symptoms after a single dose of cyclo, which lasted for two months before the symptoms came back. (Edited for autocorrect)

Very interesting, I’m sure we’ll get more details from OMF/Ron later if it continues to be so:) From what I can skim through trypanosomiasis have similarities to ME in several of its forms. I think I have even talked to a PwME who turned out to have Chagas, or read about it... hm. There are of...

As in the parasite linked to African sleeping sickness? What was the link? *curious* :nerd:

I’m so sorry:confused::hug:

I can see the use for it, with permission from the patient. Did they ask you for consent?

45 minutes without a single tweet :( bah, I wish they were live streaming. Needless to say I don’t have much else to occupy me today:barefeet:

That’s a pretty big omission.