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To be honest, it's more like the longer you are ill, the more you have battled with the the disbelief and denigration, the having hopes raised and then dashed again, the more philosophical you (have to) become. Especially, when you are more affected. It's a coping mechanism.

So I did a little search: https://www.nbt.nhs.uk/our-services/a-z-services/pain-clinic-services/pain-clinic-team Hazel O'Dowd is the Head of Dept.

I saw the word Bristol.......:cautious:

I might just print that post and stick it on my wall.....

So, Prof Crawley was allowed to trawl through school records and invite kids for a "screening " for referral to her clinic. Given that Prof Crawley has a history of conflating chronic fatigue, or even just some transient fatigue, with chronic fatigue syndrome it is very possible that she...

And bearing in mind that prior to the common use of the internet patients were actively discouraged from contact with other ME patients ......

Ironically, I know of a case of a teen with a serious, chronic and very well understood condition that had very serious potential consequences. This teen's home life was difficult and the condition was not being managed. There was a fair bit of absenteeism from school. The hospital team...

Great. So when families are already under stress, and may also be experiencing additional financial worries if a parent suddenly needs to become a carer, the very people who are supposed to help and support come along and frighten them some more. :thumbup: (Sarcasm)

One last suggestion - have you ever had an advocate? Is it worth trying to find one who will come to appointments and liaise on your behalf? ETA - including with DWP/ATOS

Well, I can't count the times your posts have cheered me up and everyone feels a bit negative sometimes. I just wish there was something I could actually DO apart from trying to suggest things..... :hug: ETA - we need a non smiley hug emoji!

Wow! You have a named doctor?!!!! They must be one not the only surgeries in the country to insist you see your named doctor. How unlucky she's a so unhelpful! Do you know when she might be due to go on holiday? (Only partly joking....)

A different GP at the same practice might be worth a go. However, my GP is helpful, but the problem is the lab. Unless a patient is already on thyroid meds they will only test for TSH. Even when the GP asks for the full set. So even if the GP is prepared to help, the lab can still scupper...

I've "liked" this but ....:mad:

I'm glad you are going mention this to your doctor @Inara . You mentioned that this happens on "quiet" days too. You may already know this, but PEM is a complex thing and it can also change over time for some of us. It can occur immediately or can be delayed by up to 3 days. So if you could...

Happy New Year @Mike Harley ! I hope you recover soon. Thank you for such a huge effort on our behalf.

From the Hippocratic Oath.

Outside of the PACE trial I would also think that there are cases where patients are giving answers the therapists want just to get themselves out of the system and away from treatments that are not only unhelpful, but may actually harm. Also it strikes me that while for most people a treatment...

As far as I am aware, historically, in the UK the only way the MEA could get into the room with any one with any clout in the establishment was if an opposing view was also aired i.e. The BPSers. This appeasement was the only way to get a foot in the door. At this point in time, I would like...

No @Trish, not directed at you at all! So sorry that it sounded like it was aimed at you ! Sjogrens is a perfectly reasonable suggestion. No. We all try to help and make suggestions here. This is rather different as I see it from well meaning family & friends who don't really bother to find...

Doesn't every human in the planet experience what they call social stress at some point? Everyone at some point has parents or guardians or older siblings, teachers, bosses. Not all of these more powerful people will be kind, gentle and understanding. If this is the case why are there not...