Petition to Jeremy Hunt: Provide funding for research into Fibromyalgia

[Mdaisy]

In the UK they are currently approximately 3 million people living with fibromyalgia in the UK alone, between 2.9 and 4.7% of the population worldwide.

Fibromyalgia is an invisible illness characterised by chronic widespread pain and debilitating fatigue among other symptoms including unrefreshing sleep, joint stiffness, dysautonomia, cognitive dysfunction (often referred to as Fibrofog), multichemical sensitivity, hyperalgesia, allodynia and bowel & bladder abnormalities. The exact cause of fibromyalgia is unknown; however, it is thought that it’s onset may be due to a trauma and this could be a viral episode, a bereavement, whiplash or a stressful experience. People living with fibromyalgia experience a painful response to pressure and can experience a heightened response to both painful and non-painful stimuli.

Diagnosing fibromyalgia can be a lengthy process as there is currently no proven laboratory test and due to many other conditions displaying strikingly similar symptoms. Patients often live with depression either as a precursor to Fibromyalgia or most likely due to living with this debilitating often disabling condition. Recent studies consider Fibromyalgia to be most likely a Central Nervous System disorder relating to central pain sensitisation among other hypotheses.

We need allocated funding for research into Fibromyalgia which will increase knowledge and understanding within healthcare and help individuals living with this condition receive appropriate healthcare, timely diagnosis and ongoing support for the condition. Therefore, we are calling on Jeremy Hunt & the UK Government to discuss the need to provide funding in order to conduct further research.

Here's the link to sign;

change.org/p/jeremy-hunt-pr...

Please share this petition using the Hashtag: #fibroresearch

Many Thanks

Please Note This post is 'unlocked' so it can be found by internet search engines to hopefully encourage people to sign and also it can be shared via Facebook & Twitter

[rosie-2015]

Signed, I hope a lot more people sign it especially with it open to the public x

Gentle hugs Rosie xx 😊

[Mdaisy in reply to rosie-2015]

Fantastic! Thank You

[rosewine]

I've signed.x

[Greenpeace in reply to rosewine]

Thanks for bringing this to our attention Emma.

I’ve just signed.

😊😊

[Mdaisy in reply to Greenpeace]

Thanks for your support GP - 140 so far and rising !

[Mdaisy in reply to rosewine]

Thank You so much x

[HADES]

Oh , How I wish ! Good to share your company at the 4am bout.

"Hope springs eternal"

[Mdaisy in reply to HADES]

Thanks for signing

[tas69]

Done ✅ xxx

[Mdaisy in reply to tas69]

Thank You much appreciated x

[Mackembabe]

signed and passed on thank you for sharing Emma

Love & Hugs Xx

[Mdaisy in reply to Mackembabe]

Thanks Mack ....grateful you passed it on

[Mackembabe in reply to Mdaisy]

Glad to be able to do it Love & Hugs xx

[Cinders1]

Signed just now. It's good to be able to do something practical and positive. Well done Emma for keeping us informed. Take care x

[Mdaisy in reply to Cinders1]

No problem as the founder of the group I am always trying to take positive action - hopefully we can share within the whole community as there is millions that need to be heard. Thanks for signing and sharing

[MKMale]

Happily signed

[Mdaisy in reply to MKMale]

Thanks MKMale

[Hidden]

Signed

[Mdaisy in reply to Hidden]

Thank You so much

[Hidden in reply to Mdaisy]

your welcome once i get my brain working! eeek il try and share via twitter

[Hidden in reply to Mdaisy]

Shared !!!

[Mdaisy in reply to Hidden]

[Fi-BROS]

Signed!!! Well done

[Mdaisy in reply to Fi-BROS]

Thank You

[Jaqs2017]

Signed and shared x

[Mdaisy in reply to Jaqs2017]

Thanks so much for signing and sharing

[Mdaisy]

UPDATE - 450+ so far Thanks to all

Any support for this Thunderclap to spread the word would also be appreciated

thunderclap.it/projects/670...

Emma

[Mdaisy]

Update: Over 1K in 3 days ! Please keep sharing and sign if you haven't already

[Mdaisy]

Update 1.7K so far - please do keep sharing and asking friends&family to sign too

[Mdaisy]

We've nearly got 3K signatures...so for those who missed this post and haven't signed. Please sign if you agree.... Thank You

[Mdaisy]

Update 3.9K signed so far....... newbies please sign if you agree and any other members who may have missed this post . Please share 🔗 on social too...Thank You for support 🖊🖋🤗

[Mdaisy]

UPDATE: Over the 4K mark .....please keep signing and sharing as at 10K the government I believe will reply and obviously if we ever get over 100K this might mean that parliament need to discuss this

[Peanut585]

Just signed x

[rach1402]

Hi, I've signed that and shared it via WhatsApp. Something needs to be done about Guaifenesin being so difficult to come by here in the UK. I would create a petition for that myself if I had the capabilities!

[Mdaisy in reply to rach1402]

From memory the research on Guaifenesin indicated that it wasn't that helpful for Fibromyalgia desquinn might be able to add further insight into this

[rach1402 in reply to Mdaisy]

All the posts I've read by people who have tried Guaifenesin have said it works for them but salicyclates block it's effects so maybe the subjects in the medical trials weren't avoiding salicyclates. Guaifenesin is safe and there are no side effects so I'm definitely going to be trying it, I would prefer not to pay an arm and a leg for it when it's so readily available over the counter in America though! It's perfectly legal, just ridiculously expensive. Isn't desquinn more into the technical side of things?

[Mdaisy in reply to rach1402]

He is the Chair of FMAUK and is often more up-to-date however as I say last I read it wasn't effective and I am always reading up on things to share with the communit too!

[rach1402 in reply to Mdaisy]

One study didn't find it effective but plenty of patients who take it do if they follow the protocol properly. Fibromyalgia has ruined enough of my life already and I have no intention of standing by and letting it rob me of my future as well if there's a viable option to try. This is no life, merely an existence and a miserable one at that and it only gets worse. It might not work but at least I will be able to say I tried, nothing I've tried so far has really helped. Guaifenesin is safe and it's legal so there's no harm in giving it a go.

Have you read this? Lots of positive reviews

What Your Dr May Not Tell You About Fibromyalgia: The Revolutionary Treatment That Can Reverse the Disease

EDIT by admin to remove link.

[Mdaisy in reply to rach1402]

I completely understand having had Fibro for 11 yrs. I am not against anyone trying it and if it works for them great! I understand that people have given positive feedback about this protocol which may or may not be valid in some cases, however in the world of medicine the only source to confirm efficacy is by research. As a UK charity FMAUK must state the information available to them that is credible and from a reputable site, we cannot say 'joe bloggs' found it worked so it must work as this is not in-keeping with the information standard guidelines. desquinn may be able to comment further on this. Hope this makes sense Emma

[desquinn Partner Volunteer FMAUK Trustee in reply to rach1402]

The only clinical research that has been carried out found it to be ineffective. That was many years ago by Dr Robert Bennett and there has been no efforts to conduct further research to prove it is beneficial.

The issue of avoiding salicylates was only brought up after the trial failed. If decent scientific rigour was applied then I am sure we would find out either way.

[Peanut585]

Signed x

[sarahannsmith_1984]

signed. hope they do get money for research

[Mdaisy in reply to sarahannsmith_1984]

Me too Thank You for signing

[sarahannsmith_1984 in reply to Mdaisy]

your welcome x definatly a worthy cause

[Hidden]

Signed thank you

[Mdaisy in reply to Hidden]

You're welcome & Thank You for signing it

[Mdaisy]

The petition needs more signatures to get a reply from government, so please keep sharing between family & friends plus in the Fibro community Thanks

[drjohnhaiti]

All people with FMS have asymmetrical neck and low back pain which the current researchers mostly ignore. The physicians who do neck and low back surgery will probably tell one something different. Research is desperately needed to focus more on the spine. Who also has left neck pain and right low back pain?

[oldwomaninpain in reply to drjohnhaiti]

mine is right neck, left leg

right neck hurts like **** from behind the ear to collar bone = all doc does is peer in my ear and tell me there is nothing wrong

left leg hurts from mid buttock to tips of toes - doc wants to call it sciatica but, having had that before, it is defo not sciatica

I have even resorted to drawing a body outline, front, back, left and right, and highlighting with red pen where all the pains are, top to toe, it was almost like doing a colouring in activity - doc pushed it to one side and told me to take ibuprofen