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The UKFibromyalgia Forums • View topic - fibomites start to fight back!its not in our heads!!



fibomites start to fight back!its not in our heads!!

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fibomites start to fight back!its not in our heads!!

Postby cat123 » Tue Apr 07, 2009 10:59 am

fibro buddys are fighting back.We have wrote to the bbc panorama team.Namely to shelly jofre.She investigates medical matters.If you want to write to her,about proffesser wesseley the man who has research funds,that says its all in our heads,who refuses to listen to evidance our condition is real. heres the web address, panorama@bbc.co.uk
Will someone inclue those articles from lancet and the british medical dairysI dont know how to get them off the forum.thanks .........cat 123
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Re: fibomites start to fight back!its not in our heads!!

Postby lynne » Tue Apr 07, 2009 1:35 pm

My letters in.



Lynne x
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Re: fibomites start to fight back!its not in our heads!!

Postby MCT » Tue Apr 07, 2009 5:15 pm

Good idea to contact Panorama.

All I can say is if the Mad Prof reckons it is all in our heads then we all must have one heck of an imagination to come up with all these symptoms we have!!!! :roll: :dunno: :crazy:

We need to get as much factual information to them as possible and identify others to contact within the media - local papers, MPs, national papers, Magazines, TV magazine-type programmes etc.

We could do with some sort of a general template that gives all the statistics of who and how many people are affected etc and then go on to put in personal details and how it all affects you.

I've been feeling a bit rough for the last few days (been out for the first time since Friday) but I'm going to have a look at what I can come up with.
http://petitions.number10.gov.uk/FMClinics/

My get up and go just got up and went!!!

As you slide down the bannister of life, may all the splinters be facing in the right direction :)
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Re: fibomites start to fight back!its not in our heads!!

Postby gillshutt » Wed Apr 08, 2009 9:05 am

Just for info as far as it being in our heads research has shown that FMers have too much substance P in our brains which causes the extra pain as it works as a pain transmitter.. too much means more pain.

I've found it also explains the anxiety feelings as it increases our defence mechanism so we start to get panicky at little things. It helps the vomit process... hence the stomach problems and causes vascodilation hence the hot flushes, temperature problems.

This means we have a chemical imbalance in our brains.. as shwn by research so how this man can deny all that and say it's a psychological problem is beyond me.. the man is an ass :tongueout: to him :evil:
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Re: fibomites start to fight back!its not in our heads!!

Postby MCT » Wed Apr 08, 2009 9:55 am

http://petitions.number10.gov.uk/FMClinics/

My get up and go just got up and went!!!

As you slide down the bannister of life, may all the splinters be facing in the right direction :)
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Re: fibomites start to fight back!its not in our heads!!

Postby cat123 » Wed Apr 08, 2009 5:47 pm

Nice one mct !!! sorry im not up to much today,overdid it yesterday......cat123
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Re: fibomites start to fight back!its not in our heads!!

Postby MCT » Wed Apr 08, 2009 8:54 pm

Have also sent a story idea to the Daily Express. I don't know if they will get back to me or not - just everyone keep fingers crossed.
http://petitions.number10.gov.uk/FMClinics/

My get up and go just got up and went!!!

As you slide down the bannister of life, may all the splinters be facing in the right direction :)
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Re: fibomites start to fight back!its not in our heads!!

Postby cat123 » Fri Apr 10, 2009 8:42 am

Hi mct,tell me about twitter,how does it work,who sees it?.........cat123
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Re: fibomites start to fight back!its not in our heads!!

Postby anne1206 » Fri Apr 10, 2009 10:33 am

Hi, MCT I joined twitter after you posted about it but dont really know what its about, all i know is I am following your post :roll: :crazy:
durate et vosmet rebus servate secundis///>Carry on and preserve yourselves for better times
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Re: fibomites start to fight back!its not in our heads!!

Postby MCT » Fri Apr 10, 2009 4:47 pm

Cat123 did you not get the PM I sent?

This explains the concept & how it works:

http://tweeternet.com/

You can see tweets containing a specific subject or follow different peoples tweets using:
http://search.twitter.com if you put in Fibro/Fibromyalgia be careful as there are a few companies touting their "cures" . I you want to send a message or reply to someone in particular put @username at the beginning of the message.

I had read that Stephen Fry was one of the most popular twitterers so had a look at his and then onto his website where he has an explanation of Twitter and how it works. He also has a retweet of the week where he chooses a certain cause he feels deserves to get better publicity - this may be worth trying for if enough of us choose to tweet him with details - could get thousands signing the clinic petition.
http://petitions.number10.gov.uk/FMClinics/

My get up and go just got up and went!!!

As you slide down the bannister of life, may all the splinters be facing in the right direction :)
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Re: fibomites start to fight back!its not in our heads!!

Postby cat123 » Fri Apr 10, 2009 8:12 pm

No mct i diddent get pm,nor have you got mine with the sounds of it! thanks for posting about twitter i will look now .......cat123
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Re: fibomites start to fight back!its not in our heads!!

Postby cat123 » Fri Apr 10, 2009 8:38 pm

Hi mct,iv had alook its just not sinking in im afaid,but im just so tired at the mo,if its headline type stuff you can put on there maybe folks have ideas for you.So you can put them on.im glad you got into this,like you say,anything to get us some attention!!Theres got to be a celeb out there somewhere with a family member with our condition,maybe we could try,to appeal via any celeb who has a twitter?........cat123
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Re: fibomites start to fight back!its not in our heads!!

Postby cat123 » Fri Apr 10, 2009 8:50 pm

Just another idea about net working,not only should we contact celebs,what about asking them to ask in their circles if they know anyone with the condition? Call it ask a celeb?They can only say no,but you never know it may work,whats that model called who has fibro?if we could find her ,she will know a few celebs.Or maybe even the right wording to steven fry might help us. we just have to keep digging,does ester ransonds daughter have me? I think ive seen that somewhere.We only need one celeb voice,i recon,with the right one,we crack the biggest easter egg!!..........What we need to remember is its not just our condition,anyone with m.e ,golf war syndrome,post dramatic stress,ect ,are being labeld,as having it all in the mind..........cat123
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Re: fibomites start to fight back!its not in our heads!!

Postby shazq » Fri Apr 10, 2009 9:29 pm

i will try to do a search on the net to see if i can find a celebs with fibro, anything is worth a try.
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
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Re: fibomites start to fight back!its not in our heads!!

Postby shazq » Sat Apr 11, 2009 12:49 pm

just thought about contacting DR Chris on This Morning.
perhaps we could ask if he could do a piece on fibro...
iam not very good in putting words to paper, so if someone wants to write to him.
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