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Oh, good grief Sam, sometimes you make it impossible for me to breathe :rofl:

@Jonathan Edwards if you have time & energy I'm sure i not the only one who'd be very interested to hear your thoughts on all this.

You are absolutely not alone in that Barry! :)

I get it intermittently too rvallee, its miserable. I once had it where i just couldnt lie flat without vomiting at all & had to attempt to sleep on a wedge & only on my left side. It started for me with the virus that triggered the ME - which involved an 'everything' kind of infection - both...

I love Oliver Burkeman he book is very good & he used to have a column, i think in the Guardian that was excellent

@Jonathan Edwards Id say an apology is definitely due. You have shown yourself here to be completely unbiased in your approach to evidence quality, of all types. I felt quite outraged & indignant when i read them digging at you like that!

We are not currently classed as high risk. Dr Sheperhd of MEA wrote something on their FB page recently about it, sorry i cant find a link but if you go to their page & scroll down you'll find it.

Im wondering at what point NICE do defend themselves?

Goodnes i hope that paper is a useful one otherwise they will all be going up a blind alley. They can learn about the nature of PEM from their patients, but of course the patients voice about their own expeiernce isnt as credible as a published paper on it :-/

well done her. I can only imagine the scorn of the GP when she went in saying i've looked at my blood under a microscope! imagine if one of us did that!!!:jawdrop::laugh:

I dont see any lack of willingness to engage with the propositions of anyone, but to take them on board they have to be credible. To my mind it would be wrong to take, or not take, on board, something based on the speciality of whomever was doing the proposing. That seems highly unscientific to...

precisely.

Interesting. Makes sense to me Yes same for me, although eating ive not noticed it helping and i always lie in reclined position to do cognitive work so i dont think it can be that. yes me too, it is truly bizarre. Also if i walk too far/upright too long i become terribly cognitively impaired...

Yes anger is a sure fire analgesic for me, if i get really angry i feel what i can only describe -in comparison to how i normally feel- as fabulous! - Much more energy, strength & vigour, and my pain levels go right down. The problem is if i *use* that energy, i then pay for it as i normally...

sorry i wasn't able to read all of your post. But i understand you are pointing out the issue of adrenaline surges after/during massive over-exertion, or in crisis when we use adrenaline to do what is necessary, which leads to a massive crash? And i experience that - thats what i meant by...

I cant be sure but i think that is what the 'central sensitisation' theory is based on?

Because he retired yrs ago sadly, otherwise i would have done. No one knows me there now. Having done a bit of research online, i've read that SIBO testing & treatment is patchy across the nhs, bit of a postcode lottery perhaps. I think its likely a waste of energy pursuing it, especially at...

yeah... good luck with that. Sorry you were unable to get help @livinglighter the situation is scandalous

How on earth did you manage that Sasha?! I was under the impression that NHS gastros were mainly convinced that SIBO only occurs in people who have had part of their intestine removed. But I'm afraid i do have it on my notes yes. Or to be more precise Somatisation Spectrum Disorder. My GP, who...

I cant remember. I think it had pepsin in as that rings a strong bell. I did so many things read so many books, took advice from a nutrirional therapist, i cant remember the details of most of it, but i do remember follwoing a detailed set of instructions, i didnt just go to the shop & get a...