Saw My MP Today

[rosetrees]

Thanks for everyone's support on my last post. I saw my MP this morning. I'm a political cynic, so I didn't go with any political expectations. I went because I feel the more people that say something the more we raise awareness.

He'd done his homework and knew who I was. He said he would have no problem with referring people to my website - he even suggested that my story was one that should be told to a journalist.

He then suggested that I should think about talking to the Parliamentary Committee on ME. Sadly there's no way that I am well enough to even think of travelling to London, but maybe in the future I might. Who knows.

He asked what did I want him to do - and I said that as well as looking at proper testing for people diagnosed with ME/CFS I would like him to raise awareness of the lack of treatment for people with adrenal issues, which are totally unrecognised. I referred him to Dr Chandy's video on youtube. youtu.be/qVYIAwHukF8(Not working as expected?)

The meeting was as positive as I could have hoped for. I have no idea if anything will come of it, he's an MP after all!

[Moggie]

Good for you - he sounds a hell of a lot better than my MP, who has just been booted out of the conservative party for feathering his own nest.

Moggie x

[alangardner]

way to go girl , just remember if you cannot get to them , if you push hard enough they may come to you [ all things can be possible ] .....keep going and like me be overtly synical .....alan x

[Clutter]

He researched you and must have found you persuasive to suggest you might talk to the Parliamentary Committee on ME. I'd consider that to be very positive.

I think you've done very well and should be proud of your efforts to improve awareness.

[chihiro]

Fantastic! Well done you. Impressed that he researched you before meeting you, that speaks volumes im my opinion.

[Hidden]

Good work, well done! He listened and was interested enough to suggest what to do next so definitely a result.

Please keep us updated.

[Ansteynomad]

There's a parliamentary committee on ME? Really? Is there anyone else on here who has a CFS/ME diagnosis in error who fancies a day out? I'd happily tell them my story!

[sandi in reply to Ansteynomad]

ooh yes, let's have a big outing - count me in!

[rosetrees in reply to Ansteynomad]

If you'd like to tell your story, I have a section on my website for just that. PM it to me and I'll add it. All anonymous.

[Agapanthus]

You can find out about the CFS/ME Parliamentary Committee at the moment on the ME Association site as they have literally just put in the minutes of the latest meeting.

meassociation.org.uk/2014/0...

[mstp]

If there is an MP who will listen, I think he or she should be asked why the NHS pays so much for their drugs. My GP won't prescribe my T3 so I have to buy them from Mexico. I'm sure it is because they are so costly for the NHS.

[rosetrees in reply to mstp]

Although that wasn't something I've raised with him on Friday, I did raise just that issue in writing a few months ago. I have a long, rambling reply from Lord Howe somewhere (if I haven't "filed" it). It is certainly a subject I shall be returning to.

[beaton]

Thank you Rosetrees,you have enlightened me. I have been battling with symptoms since 1979 when I had a flu like illness Passed from one doctor to another and dismissed by them all. My symptoms were the same as my friends. She was diagnosed with ME and I was left to struggle on alone.I was diagnosed with "a thyroid problem" in 2009 which has worsened until I found this site and started standing up for myself. I din't realise you had your own website,I've just read the first page and agree with you.Thank you for you efforts and good luck with your battle.xx

[rosetrees in reply to beaton]

Thank you beaton. It means a lot to me to know that my site can help people on their journey. Refer your friend to this site and to mine, perhaps she can be helped too.