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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...

Demand for thyroid hormone and thyroid output fluctuate. Nowhere near as rapidly and as markedly as insulin demand and production, but a similar idea. It could be the NDT was no longer making a noticeable difference because you were no longer taking a therapeutic dose-possibly because of...

In the tent.....out of the tent...... Let's just get rid of the tent!

:hug: @Squeezy! People who make "helpful", uninvited suggestion on how I could get better really p*** me off. Really? Before becoming ill I was a sensible adult with an intellectually demanding career and a mortgage and a life. I've also had 2 log decades to have a think about it. Have a...

I think the poll has been a great idea @Sly Saint :thumbup:. I was very surprised that some people have very little pain while some of us have a great deal of it. I am sure that people who have low pain might experience other symptoms that I don't have it have very mildly. Also the discussion...

To be honest at times I think it's easier to have it myself than it would be to see my child go through it. Sometimes I find myself just trying so hard to simply exist that I don't have the additional resource to think too hard about it. Harder again to have it and have to watch your child...

Welcome @Chris. I don't think you're alone in wanting to know why we crash and how to stop it.

I'm late to the thread but really hope this improvement continues for you @Woolie ! As far as I know I don't have raised CRP and I was prescribed zantac for gastric problems. It didn't help the gastric problems and made no difference to my ME symptoms either.