I think this is helpful: This is a video of a... - Thyroid UK

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I think this is helpful

sulamaye profile image
10 Replies

This is a video of a recovery from m.e story. I know many of us on this site also have a dignosis of m.e and I think this story is very useful because the man concerned had lots of money to throw at the problem and it demonstrates how a functional approach to our bodies can explain what is happening and aid recovery. This is also relevant to many who have 'normal' thyroid blood tests but have hypo symptoms.

Please watch and draw your own conclusions.

youtube.com/watch?v=9N3pBI1...

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sulamaye profile image
sulamaye
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10 Replies
CarolineC57 profile image
CarolineC57

Thanks, sulamaye - I'm just going to watch this now. :-)

sulamaye profile image
sulamaye in reply toCarolineC57

I just listen to them, less tiring, while lying in bed. You don't need to see them. 😊

denvajade profile image
denvajade

Fabulous!

Thank you for posting this Sulamaye, I found this extremely helpful as an overview of good management and treatment options for ME/CFS.

sulamaye profile image
sulamaye in reply toourfriendsinthenorth

I'm really glad people are finding it useful. I tried to post it on the m.e unlocked site but it disappeared. I don't go there much, perhaps I shd try again. I have started work with one of the optimism health clinics dieticians, she has started me off gluten and dairy free as one Wd expect and is repeating the mitochondria tests I had done by Dr Myhill four years ago. i found her much more insightful and clear in her interpretation of my previous tests than what I got from Dr Myhill.

I must have so far spent about 3-4 thousand on this illness, that was my savings. I've tried everything I can think of, their over arching approach makes me Wish I'd gone to them first, they re expensive but they seem to be the most expert and insightful about what needs to be tried and in the long run if I'd gone there first it Wd have saved me money.

I am very interested to see how my mitochondria is functioning now, will it be like my stress test and worse despite never having pushed myself physically, and not being an anxious personality, or improved? I feel she has more things up her sleeve whereas other practioctioners have been one trick ponies and when the pony couldn't take me very far I had to cut my losses.

I watched another where a woman had been ill for twenty years and it was the nutritionist that enabled her to make a full recovery not the psychology.

Everdean profile image
Everdean

Thank you for this. I was diagnosed with CFS . I found out for myself I have thyroid and adrenal issues. I wish I could afford to go as I still don't feel well.

Hopefully they will make it accessible for others like me.

sulamaye profile image
sulamaye in reply toEverdean

Well they're trying, if the research goes well their aim is to get the NHS to offer this approach rather than their useless and sometimes harmful approaches.

I have to say that it is a struggle, my partner, child and I have been living off 15,000 for the last three years and not much more before that. I have always reasoned that if I can find a way of recovering then when I'm better I can earn more money. That's where all my savings went on that logic! My partner is very supportive and it has been a choice between shoes for my nine year old or meds at times. This lot is going on a credit card for the first time. If it works I will let people know and then I would advise borrowing off friends or family if the likelihood of full recovery is high.

Everdean profile image
Everdean

Thank you for that. Sadly not an option for me as a pensioner. I would struggle to pay money back.

sulamaye profile image
sulamaye in reply toEverdean

They are about to start looking for people for their study. It may take a few years but go to your GP and ask him or her to put themselves forward as a provider of people for their study. You never know you may end up being helped. Also if you are ill you should be getting what was attendance allowance. They are far less suspcious of pensioners. Sadly my mum died in Feb, but she retired as a self employed artist two years ago and with pension credit and AA she was on as much money just for her with no mortgage to pay as we were on as a whole family. If you have m.e and you are retired you will qualify. Contact the M.E association for advice about how to apply for PIP. I am currently appealing PIP, but my mum was given AA with out anything more than the application we did and the list of meds she is on. Good luck

Everdean profile image
Everdean

Thank you Sulamaye.

I will look into this.

I hope you get some good results from PIP.

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