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I don’t tend to get sore throats or fluey feelings but if I have overdone it, I find that I am much much more sensitive to noise, light and smells. I feel physically exhausted and I can’t support myself easily with my core muscles. If I try to move about too much, my heart rate races. My temp...

A polite email attaching JE’s submission to the Scottish parliament, with a very short explanation that this is an excellent summary?

I think I have worse pain if I don’t take LDN but having said that, it doesn’t make a huge difference to me. I have tried a variety of doses and currently am back down to 4.5mg because more didn’t seem to add benefit. Initially I had some improvement that I would put down to the medication but...

I would like to sign....thank you for the work on this. I think it looks very good. Daisybell, person with ME and moderator on the S4ME forum.

And that’s why they are struggling to recruit participants/complete the study. I guess most of us have at least one other diagnosis.....

@Jonathan Edwards - moving into rheumatology now..... I see they are not calling it CBT and GET - but CBA and PEP (personalized exercise programme). It’s like the spread of a contagion.

Sorry but I feel much better after a cup of tea!

https://www.washingtonpost.com/health/medical-mysteries/nearly-100-doctors-have-tried-to-diagnose-this-mans-devastating-illness--without-success/2019/09/20/0cb0e8c6-aeef-11e9-a0c9-6d2d7818f3da_story.html I thought this was interesting - who knows maybe his illness has some link to ME?

Sticking to facts! FFS.

I’ve got kiwi just up the road in a DOC reserve..... you can stay @Jonathan Edwards !

It’s a shame that probably most of us won’t be able to fill this survey in... it requires you to have seen at least two medical specialists in the last 12 months for your primary illness. The email contact is wwrapson@aut.ac.nz in case anyone wants to write to her about this. I’m considering it...

Re anaesthetics - my one and only experience has been of being hypersensitive. Out like a light and then taking ages to come round..... I wonder whether this is worth a thread to collate experiences?

She still thinks it ‘works for some people’ - but I hope that she will think about the ethics of recommending a ‘therapy’ to patients that tells them they haven’t tried hard enough if it doesn’t work....

I think my GP must have been to this. Today she asked me if I had heard of Mel Abbott. I said that I thought anything that placed the emphasis on the person being responsible if they didn’t improve was unethical and that most of these LP-style approaches were simply money-extraction with a hefty...

I really like that phrase ‘ effort is insurmountable’.

Those poor, weak people who just can’t cope with life....pesky, irritating little things. If only they could understand they need to be more like me........ I would never respond that way to being ill. In fact, I don’t think I could ever get an illness that wouldn’t go away. I’m too self-aware...

I think throat muscles, tongue muscles and jaw muscles work extremely hard... and that’s why they fatigue. I’m a SLT by background, and I’ve noticed changes to my voice and swallowing... I had a modified barium swallow recently - nothing abnormal picked up but I know it’s deteriorating slowly. I...

This is fantastic!

Thank you for coming on here @NeilH I appreciate that this is your story, and that we are all different. I’m still not sure that seeing not getting out of bed as a mistake that others might want to avoid is necessarily good advice. For you, obviously you got to a point where you felt able, with...

My mother must have listened to one of these radio 4 programmes. Now she is worried that maybe I have Lyme disease.....:banghead: I said I don’t recall ever being bitten by a tick but that hasn’t dissuaded her.