Researching Your Fibro Symptoms
In this article we will be looking at the information we give our members and how to research credible sources.
With so much conflicting information on the internet and GPs not offering much more than often ineffective medication, it is no wonder that sufferers find information about their symptoms confusing and often get drawn into expensive purchases, which promise ‘miracle cures’. So, how do we know we are giving our members credible information?
First, I have made sure that our Facebook page is a strictly no selling page to safeguard our members from impulsive purchases. I remember the first few people who joined our Facebook page in 2016 and one immediately posted she had puppies for sale! Now if that person had approached me and said, I have a fully trained assistance dog whose partnership had fallen through, here are the advantages and as I am the training company, is it possible for you to get in touch and have a chat about how we may be able to help someone, then I would have considered publishing the post. However, this was a private seller wanting to sell her puppies for around £1000, breeder unknown, history unknown. Is the breed suitable for someone with chronic illness? Would the purchaser be capable of a commitment of around 15 years?
At the end of the day we don’t know if a post is credible without checking their authenticity, if we haven’t the information to make even an educated decision of whether it would genuinely benefit our members, how could we know?
Sources of credible information
Where do we find credible information? We can find information in books, online, in journals and papers, websites, magazines, and newspapers (electronic), forums and Facebook pages.
Books
Everyone thinks that because a book is published, that the information it contains is gospel. When I was first diagnosed, I read a book by a doctor and a book by a sufferer to get an all-round idea of the condition. After learning that everyone’s condition is unique, I could only see the information from the point of view of the sufferer. However, the books did act as a guide for me to track back to when my symptoms started.
Online Journals
I have been lucky that I have one or two friends that are health professionals and they have sourced relevant papers for me to share on the Facebook page. Occasionally, someone will post a paper on one of the global sites. These papers should have dates, authors and links to a wider resources and credible research. These papers are handy to post if you would like members to understand a specific area such as mitochondria. https://www.drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure?fbclid=IwAR04gf9fpEB0BsOWx_q5EXipCCI3kYa_S0btVmPeeEd2b4TSdUuskQFCU2c
Websites
Google search will bring up a host of articles and websites according to what you are searching for. After wading through ads at the top of the page, you will find the regular sites will be using key words to enhance your search. However, they will be general sites, advertising their products with a brief introduction to the ‘Fibromyalgia symptom’ you are researching. There is little of the in-depth specialist knowledge you are looking for and they quickly recommend a ‘miracle cure’. Your first point of call is the NHS site or the Centre for Disease Control and Prevention (CDC). These sites offer basic information. The UK Fibromyalgia (UK FM) site should be your second point of call along with Fibromyalgia Action UK (FMA UK). Although these sites are comprehensive in supporting members, America seems to be leading the way in research with websites like the National Fibromyalgia Association and Living Smarter with Fibromyalgia.
I must admit Living Smarter with Fibromyalgia is my preferred go to website, Lisa Ehler Curley is a colon specialist and all round certified holistic, fitness and nutrition instructor. She is also a sufferer. She only recommends products that either she or her clients have had positive results with. However, at Fibro Active we are not able to recommend any medication or products. What we can do is sign post to the site and recommend that if members want to try the products, they should consult their GP first. Lisa’s site is very comprehensive, and she has an e-book to purchase and download for easy to reach information.
Sources that are not credible include Wikipedia and Pinterest. The information on the Wikipedia pages can be changed and this is not recognised as a credible source by Colleges and Universities.
Quote ‘It’s got to be true! I saw it on Pinterest!’ will always make me chuckle. Pinterest is a fabulous source of inspiration and I often post their images on our Facebook page for light-hearted banter. However, that’s as far as the information will go.
Magazines
So, we are all going to be biased and say our go to magazine is this one, where the writers in the magazine have been carefully selected by the editor. It is a great source of information either digitally or through your letterbox. There is no need to research the credibility of the sources as the writers and the editor have already done it for you.
Newspapers (electronic)
Every now and then something happens to bring Fibromyalgia into the headlines. Articles get published about the next celebrity to be diagnosed and that triggers a social media frenzy, which sensationalises the condition for a few weeks. Many articles are ‘fake news’ that hooks sufferers into purchasing the ‘miracle cure’ or booking the amazing massage or oxygen tank experience. Unless there is credible proof that products and services work, they are best avoided. Which source would you believe the most, a tabloid newspaper or a broadsheet? People read a tabloid for entertainment and gossip.
Facebook pages and forums
Most credible websites will have a Facebook page, and some have forums too. Facebook pages offer information, whereas forum users ask for everyone’s personal experience. Hopefully the Facebook pages will post mainly information by credible sources. However, there can be thousands of forum members all wanting to ask for and give information gained from their experience. Although it can be argued that the information is credible because the person is a sufferer, we go back to the book situation and identify that every person on the site is on his or her own unique journey and that everyone’s experience is true to themselves but cannot be compared to others.
General points
The main points to remember when researching information to answer questions to deliver as a workshop or post on your page is:
· Look at 3 or 4 different sources. How do they compare?
· Always reference your sources so they can be verified, and don’t plagiarise other people’s work.
· Check the comments; are the comments positive or negative?
· Are the articles written on specialist sites or is it an insurance firm, supplement seller, or mobility specialist trying to sell something?
· Are there any links on the article that lead you to further information?
· Have a look at the background information about the website.
· Have a quick look at a book before you purchase, is it someone’s personal blog or does it contain medical references? What do you want to get out of the book?
When researching symptoms, it’s almost inevitable that we will find a recommended pill or diet to cure us. We all want that quick fix to take away the pain, but sadly for most it is either short lived or it doesn’t exist. Having a comprehensive understanding about our condition will help us understand how to manage it and furthermore, accept it. At Fibro Active we strongly, believe that looking at changes in lifestyle, healthy eating, keeping moving and accessing emotional support goes a long way to reducing our symptoms.
Choosing the right sources of information is crucial in helping us make the right choices. We must be mindful that not every company has your best interests and one member’s symptoms will more than likely differ from another’s. Generic information is best delivered to allow members to discuss what they have found suits them and what eases their symptoms. Have a list of recommendations that will help to reinforce the discussion such as; rest and recovery, pacing, heat bags, ice packs etc. whilst being mindful to not discuss medication or supplements.
Medication is an individual issue and should only be discussed with your GP. If supplements are discussed, then have a list of side effects the supplements might cause. Something as innocent as turmeric can have 5 pages of side effects. Again, reiterate that individuals must consult their GP before trying them. Recommending medication or supplements, if you are not the member’s GP or specialist, could invalidate your group insurance.
If you are a sufferer and a facilitator, your personal opinions could frequently be challenged by the evidence of your findings. Try to keep an open mind because the answers are variable to every individual. No one yet has the right answer. We can only guide everyone in the right direction.