VERSUS/ARTHRITIS/AND/FIBRO: Hi all i... - Fibromyalgia Acti...

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VERSUS/ARTHRITIS/AND/FIBRO

antbeech1963 profile image
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Hi all i have just read an email from versus Arthritis i am a member of and have been following there funded studie into fibromyalgia and its antibodies that cause the increased pain muscle weakness readuced movement.not the mind like all the doctors say to you .its all in your mind mate. when you have just spent 24 hours in total pain not much sleep and you have to go to work. feeling like a sombie. if you go onto the site. versusarthritis.org and read the research into fibromyalgia and arthritis. so its the immune system rather currently held view tha fibromyalgia originates in the brain.so the researchers to do mre test to help in developin new treatments.so after 25 years of suffering someone is taking it seriousley.

many. thanks antbeech.

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antbeech1963
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desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee

This had been shared several times including the guardian article that gift s lot of attention. The research only suggests and more validating is required and a lot more questions to be answered. If you check the causes page if versus you will see no mention of this as we are nowhere near confident of this being a factorversusarthritis.org/about-a...

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to desquinn

The study has been discussed previously here

healthunlocked.com/fibromya...

antbeech1963 profile image
antbeech1963 in reply to desquinn

Hi desquinn it seems i am a bit behind the times i am not very good at this i read this thinking at least they are finding new things and treatments but just geting mine and everyones hopes up if there was just a little hope that one day we could go to bed without pain and wake up without pain i did read most of it and they said a lot more test and things need to be done. but i do think like most people the real cause of fibromyalgia and take it seriously thanks desquinn 🙂

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee

There is hope in this research but making conclusions on one study is foolhardy and we always need more :) Also new research and treatments tend to have long windows like 15 years before we see benefits with many opportunities to fail.

"but i do think like most people the real cause of fibromyalgia and take it seriously"

I do not think it is most people and social media /internet is not authoritative or representative. If the researchers that are working in the field for the last 20 years + think it is likely to be the CNS theory that is most likely BUT are NOT sure then patients cannot be either.

I say that as a patient and a representative of FMA UK.

antbeech1963 profile image
antbeech1963 in reply to desquinn

Hi desquinn i agree with you i dont do social media apart from this because when i was going through a bad patch its good to talk to people in the same boat. i have been a member of uk biobank who 18 years ago took dna from 500,000 people all over the world and i have to do sertain test they send me monitors . but during the covid i have been doing blood samples to see if i had been in contact with people with covid or was just a carrier.anyway back to fibro.befor they changed the name to fibromyalgia from muscular rheumatism fibrositis. so that i got this on the versus arthritis site. but we are not taken seriously.because they just say you got fibro but we cant do anything for you. ? so is there any hope in sight . they can use me as a guineapig to find a cure . lucky for me i am in oxford and i got everything within 3 miles

Many Thanks

Tony

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