About Research....: Hello Everyone... - Fibromyalgia Acti...

Fibromyalgia Action UK

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About Research....

Mdaisy profile image
11 Replies

Hello Everyone,

For many this post may not be your cup of tea but for those who have an interest here goes......

Medical research is undertaken to determine efficacy of medications, for DNA & Gene studies, to find treatment & vaccines, for clinical trials and many other reasons.

Professors & Doctors within their field of studies produce research papers which if credible will be published. The findings of one paper may not be unfortunately enough to show that a medication is effective for instance. Many independent research papers must collectively produce the same outcomes before the research can provide results that is evidence based.

There are 2 types of research:

Qualitative : This is research that is done based on the experiences or subjective views of

the participants (ie based on thoughts, feelings & experiences)

Quantitative: This is research that is done based on data, figures, statistics from

experiments that can be quantified. (ie: facts)

A couple of other important things to explain are;

Variables: Variables are taken into account with all research to decide whether these could

have any effect on the results, possibly making them inaccurate.

Placebo : A placebo is a substance that is used as a control in testing new drugs. It is

known to have no effect on the symptoms and is used alongside the drug

that is being tested. The participants do not know whether they are taking the

placebo or not , so therefore the findings should be as accurate as possible.

This is to aim provide results from both groups and in theory the results should

show no benefit in the placebo group with either results showing symptom

reduction or not as the case maybe in the medicated group

Fibromyalgia Action UK has been accredited by the Information Standard certificate, link below;

fmauk.org/information-standard

This means the information we provide must be

•accurate

•impartial

•balanced

•evidence-based

•accessible

•well-written

Here is a link that explains FMAUK's aims;

fmauk.org/home-mainmenu-1/a...

We are committed to providing this which helps you to stay well informed about Fibromyalgia. We hope this will empower you to take steps to be proactive about your healthcare

I hope this has been of interest to some of you

Best Wishes

Emma

Community Coordinator

fmauk.org

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Mdaisy profile image
Mdaisy
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11 Replies
Saskia profile image
Saskia

Hi,

Thanks for sharing this Emma.

I have signed up for the Kings College Gene Study but as yet have not received my blood test kit. Do you know if there is a delay in sending these kits out? I don't want to be overlooked!

Hope you are OK. Hugs Saskia XX

Mdaisy profile image
Mdaisy in reply toSaskia

Morning Saskia,

As we are only advertising the study I would not like to say, maybe a call to check might be in order. I had my mine about 3 weeks after applying I seem to remember and I'm all done & dusted.

I am not too bad, being treated for Vitamin D deficiency as it had dropped and was causing increased symptoms. Battling on, Thank You :)

Emma

ladymoth profile image
ladymoth

Thanks Emma for this clear explanation.

There is so much info on the 'net, now - a lot of it with an advertising aim, and it's always wise to check sources of information, before believing what you read!

It's important to find out who has carried out the study, and also who has funded it.

For instance, an American chemicals company have funded many academic studies, but some of their results might have been considered biased as they were paying for research into their own products and the safety thereof!

I have not named them, for fear of being seen as libelous, but if I mention artificial

sweeteners, that might give you a clue!

Moffy x

Mdaisy profile image
Mdaisy in reply toladymoth

Thank You Moffy,

I agree entirely with you , maybe I should have underlined or made the word INDEPENDENT research more visible. As you say people who have paid for their own research obviously have a vested interest in the results going there way, should we say and it is usually for financial gain.

Please be careful for any websites offering products that will help your Fibromyalgia, always check there is independent research to back up the claims

Saskia profile image
Saskia

Thanks Emma,

I'll look up their "phone number and give them a ring. I don't want to be left out as I think it will be a very worthwhile study.

Re your Vit D deficiency....was that picked up on a blood test? I started to take Vit D a few weeks ago, as I sit next to a very nice lady in the Choral Society I belong to, and she is a part-time GP. She knows that I have Fibro. and she said that it would be advisable for me to take a Vit D supplement. She said that a great many people are deficient in Vit D without realising it. Have you felt any better since taking it? I'd be very interested to hear.

Like you and so many others on this site I am battling on, too!

At least the sun is shining today but the wind is still bitter.

Happy Easter,

Saskia.

Mdaisy profile image
Mdaisy in reply toSaskia

Hi Saskia,

Vitamin D deficiency was found by blood test result, I have only taken 2 tablets so far so cannot comment if I feel better as yet. I'll keep you posted. I had increased fatigue, pain & headaches and subsequently asked the GP for blood tests covering Vit D, B12, Thyroid, Full Blood Count & Calcium.

I would certainly consider having your levels taken as the over the counter preparation of Vit D is not an adequate dose to help should you have really low levels.

Happy Easter to you too, enjoy the chocolate !

Emma

B2WC profile image
B2WC in reply toSaskia

Dear Saskia,

Just reading your respond, I just want to share my experience with you all who are reading this information. I suffered FM for some time now, and have been taken Vit D as well as magnesium oil rub, to be honest, I have not seen any differences so far...,but then I am unsure if I do not use it, would be condition would be worse?

Saskia profile image
Saskia

Hi Emma,

I'll ask my GP when I next go to see her in mid April. I didn't think about the correct dosage.

Do let me know how you get on with the Vit D when you start to notice some improvement which I hope will be soon for you.

I'll certainly enjoy some chocolate!

Take care. Saskia XX

B2WC profile image
B2WC

Hi Emma,

I am setting up a company which objective is to increase the level of awareness of Fibromyalgia as well as CFS, I am going to do it with the help of my local health care professional by doing speaker meeting etc, some of the profit gianing from this event I could like to donate to Fibro action/local FM group, is there anyway you can help me with this? I mean how do get the F.A to support me on this event.

Thank you

Mdaisy profile image
Mdaisy in reply toB2WC

Hello B2WC,

It would be best to email us using info@fibroaction.org and this can be discussed further as our CEO would be able to provide you with the necessary answers. We welcome your consideration to help raise funds and awareness therefore if we could further discuss any details this would be helpful to both parties :)

BTW Thanks for comment on the 'How Fibro is diagnosed post' much appreciated. Lindsey Middlemiss our founder & chair is actually the one who wrote the information and all I did was link to it ;)

Many Thanks

Emma :)

FibroAction Administrator

B2WC profile image
B2WC in reply toMdaisy

Thanks Emma, well it is indeed helpful for you to pass this on, yes I definitely will email it once I have got the data on how/when will this seminar take place

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