Question - Interested to know your opinions

Hello Fellow Members,

How about an question with valid answers to both sides of the debate most probably, this came up as a comment on Facebook!

Question: Should we stop campaigning about Fibromyalgia being real?? Please read below;

Do you think the Fibromyalgia community should stop validating Fibromyalgia as a real illness to concentrate on presenting the facts? (as the perception that we campaign it is real may have the opposite effect)

OR

Do you think this is what grabs headlines & therefore means public read it and this helps awareness?

Will be intigued to see your comments & discussion

Please Note this may be shared on Facebook and/or Twitter

Best Wishes

Emma :)

FibroAction Administrator

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26 Replies

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  • Keep saying that fibro is real could be counter productive. Of course it is but if you keep saying it , it leads to doubt.

  • Thank You Betty - I do sway one way and that with this discussion, interesting to hear your views :)

  • There is often a need to validate Fibromyalgia as so many people who are ignorant of the facts will home in on all the negative press/research and form the belief that its a made up illness, in reality when you read the whole of the story it is simply someone trying to sell their new book, flog their snake oil cures as if we haven't tried everything. On a personal level I don't feel the need to justify my diagnosis to anyone nor explain it as no one questions other conditions. We have Fibromyalgia and live with it and its devastating effects daily we should not need to explain ourselves. Lou x

  • Thank You Lou, I understand we as people should not have to justify ourselves at all like you quite rightly say but in the means of a UK Charity, Petition or Campaign what are your thoughts? :)

  • Put the facts out there as with any other condition, to campaign about it being real, as Betty said is counterproductive. I think a great job is being done, thankyou. Lou x

  • I'm for continuing to push for recognition of FM as a disease. The previous discussions of a new designation - SEID - prove to me that the medical community is waking up to this. SEID stands for "Systemic Exertional Intolerance Disease."

    Here is a google search with multiple articles from Science and medical journala and articles.

    google.com/search?q=SEID%3A...

    I hope this link works for connecting you, but if not, use this term to google: "SEID: systemic exertion intolerance disease & Relationship to ME/CFS"

    I won't continue to call it a syndrome when it is beginning to receive the respect it should get. It is a disease.

  • Interesting Clare_hart Thank You

    I have been aware of the change to SEID for a while and watched Tweets about differing opinions. I think it explains ME fairly well but maybe wish in my own personal opinion if they added a 'neurological' aspect to the name also

    We had the same discussion about Fibro here after Dr Kevin White suggested a name change, you may be interested in the post;

    healthunlocked.com/fibroact...

    What are your thoughts?

    Best Wishes

    Emma :)

  • I see my Neurologist for Fibro more than Rheumatologist whom I see for arthritic condition. x

  • Yes, getting these illnesses into a Classification with the World Health Organisation is really important! which ME/SEID is now of course -

    meassociation.org.uk/2013/0...

    Lobbying for change and support of petitions can bring about change. I followed & signed Millies Trust from the beginning about nurseries for children and unacceptable 1 First Aider to x amount of children rule !

    They made it to a parliamentary debate and now we will see Millies Trust Kite Marks on nurseries! If interested please Google (but just an example) - note might be upsetting to some due to the reason for their fight after losing their child.

    Some say we the people cannot bring about change but we must have hope & be positive to keep fighting for it ! :)

  • I am going to be going to a new GP soon. One whom I hope will understand fibro better. If not, I'll keep looking for a new one.

    I will ask her for a referral to a neurologist. Don't know why I didn't do that before. Somehow I missed the discussions and thought it should be a rheumatologist.

    I also missed the discussion from Dr. White. Maybe it was before I was a member, but I have neglected to read very many articles of his on this forum. I will check it out Emma. Thanks!

  • I have thought about this long and hard and would go down on the second option. I think keep on trying to validate that it is a real illness could actually put doubt in some peoples minds. I cannot imagine that in the United States where the majority of people rely on health insurance for their treatments and meds that if the health professionals there did not believe it is a real illness no one would ever get their meds and treatments paid on health insurance. In fact in the USA it is accepted as an illness and they are at the forfront of research and using a whole range of treatments sometimes alternative to help their patients.

    I think we should just try to bring this illness into the wider domain and explain how its multiple symptoms can have a devasting effect on peoples lives in the hope that there is more awareness more money might be available for research into treatments and more knowledge and understanding by the general public. Not one of my friends or family had ever heard of the illness until I was diagnosed which says alot to me.

    I am very interested in how other people feel as all views are very relevant.x

  • I am in the US and maybe there are some areas that are more receptive, or maybe it is just my GP. Even the pain management doctor seems unwilling to offer any substantial help which makes me wonder . . .

    (incidentally, because of statements by mDaisy and others, I am going to ask for a referral to a neurologist)

    I live near San Diego. That might make a difference? We still call it a syndrome, not a disease; but I can't speak for the rest of the country. All I know is that currently it is difficult to get proper treatment, including, and maybe especially, the pain relief I need.

    But I agree that this illness needs to be brought into a wider domain. It is misunderstood, though where I live it is usually an illness most people are aware of. Even if they don't believe it's an "illness," like renal failure or MS. That to me is the real sticking point.

    I think the research is clear. It requires the respect of the medical associations to recognize and proclaim it a valid disease. Some of these docs have to be knocked over the head, or retire and let the more open-minded lead the discussion. That's in my humble opinion. :-D

  • Hi Rosewine, I am with you. I had never heard of it until I was diagnosed. Well I think I may have heard something somewhere but vaguely. I believe it is already accepted as a 'real disease' but there is little awareness of what it entails and the impact it has on people's lives. There is also very little knowledge about how to treat it and people don't understand that the doc can't give you a magic pill. There are too many symptoms - fog and fatigue appear to be most prevalent xx

  • Personally I think we should consentrate on the facts afterall if it wasnt real how come so many people suffer same/similar symptoms who had never heard of it and never met other suffers until researching online or being medically diagnosed.

    Yes there are none believers and the only way to get them believing is present facts and present a week/day in the life of a suffer who can work and one who can not to support how difficult it is to manage whilst dealing with everyday life.

    Kitty x

  • Yesterday I was with a group of crafty friends who come from a wide range of backgrounds and with an equally wide range of health issues and the discussion came round to articles we had each read recently about various medical breakthroughs, mainly in relation to cancer, but a recent report from America about fibro also came up and I was surprised by how many of the group had read the article, despite not having any close relatives or friends, apart from myself, with fibro.

    In light of that discussion I think I would steer clear of the campaign to prove fibro is real and focus more on the facts, as they are known and updated, and the impact that it can have on people's lives. I think the impact of this condition and the fact that it has such a wide range of effects from those who are able to maintain a semblance of a normal life and are able to carry on working to those who are almost housebound and at the end of their tether due to the debilitating effects of the pain. In my opinion it is these facts that will help our case more than anything else.

  • There was one of those poster thingies on my facebook page today, this one was about not faking being ill, but faking being well because it is easier than explaining about how you feel all the time.

    It was not referring to fibromyalgia but to another illness. I commented that this is my life with fibro.

    I think that this sort of thing gets the message across a lot better than trying to get people who have no interest in fibro to read long reports on what it is like living with fibro.

    And i also think that keep telling people that fibro is real simply makes them wonder, why, if it is real do we have to keep saying that it is.

    im rambling but i think i got down what i was trying to say. :O

  • OMG Mayrose that is so true. I am always pretending there is nothing wrong. Like you said - it is easier than trying to explain. Also, if I do that then it makes it easier for me to keep telling myself there is nothing wrong and I need to get a grip and give myself a kick up the butt xx

  • Hi, I don't think that we should be campaigning to prove that Fibro is real, as I think that by saying it is real, puts doubts into people's heads as to whether it is or not. As some of the others have said "state the facts, and give examples of how it affects people's lives, and how sufferers have to live with it on a daily basis". Also, we should be campaigning for Fibro to be recognised as a disease, or disorder, not a syndrome, as that in itself puts doubts into people's minds.

    I personally haven't had problems with people not believing me, but it upsets me to hear and read stories about Fibro sufferers not being believed and having to fight for pain relief and referrals to Consultants.

    That is just my opinion, and would like to say that the campaigning that FibroAction does on our behalf is greatly appreciated. 👍

  • The battle with psychiatrists illness beliefs is old history not the future, carrying on the debate has no useful purpose.

    With over two and a half million suffering a voice that shouts as loud as it's numbers, no longer a secret illness suffering in silence.

  • Very interesting? I never say to anyone that Fibro is real as I expect them to take my word for the pain that I am suffering. As I am an open / supportive person to whom my friends / family turn to for a shoulder to cry / lean upon then I expect the same in return.

    Thanks for the debate it is very interesting.

    Kenny x x

  • Fibro is "Real" Interesting debate from every one. I agree there is no longer the need to pursue the battle for Fibre being a "Real" illness. As so many say that has become counter productive.

    It is excellent that Fibro is now recognised on a much wider plain in medical circles.

    The need is still there however for the general public to be given greater awareness.

  • I'm in two minds really. If you keep saying its real, then people will doubt you - nobody doubts that MS, Lupus, arthritis etc aren't real conditions/diseases. TBH I'm not yet diagnosed, my GP has said it's probably fibro but when I've told family, friends and people at work I've been met with nothing but sympathy and understanding. Nearly everyone has said they know someone with fibro. The single person who has hinted it's not "real" and just "chronic fatigue/post-viral" and she said that with a sneer was my GP nurse....

  • I definitely do not believe we should be having to justify that Fibromyalgia is a real disease as it will cause people to think that we're all a bunch of hypercondriacs and cause doubt in their minds. Why not present all the facts that prove it is an actual illness/disease ? We have to lose this image of it being a phantom illness and move forward with facts and awareness and be taken seriously.

  • I am now fining that most members of the medical profession now accept that fibro is not`all in the head`but have no idea what the symptoms are apart from pain.

    I had to take a leaflet down to my own GP before i could get him to listen.

    The mental health doctor that i saw gave me the condecending look when i said that i thought my problems were down to fibro. He put it down to vascular and the doctor at the Tribunal told me that having fibro does not cause speech problems. I looked him in the eye and simply said yes it does.

    I was expecting more but he let it drop.

    i just hope that he looked it up later.

    This is what drives me mad, much more than the general public being ignorant, these are the people that we have to rely on and it drives me nuts.

    Any plan that that reaches the public will also reach them And then maybe they will start taking more interest.

  • According to patients comments on our doctors page at least two of the four main doctors at our practise believe that fibro does not exist. Fortunately, for the moment until I move I am with a young doctor who does believe in it but is rapidly running out of ideas for treatments that might help either to lack of funding or the bad side effects I get from certain meds.

    I am just praying that when I move the doctors at the new practise are believers as I don't feel I have the strength to keep on battling against those who think it is all in the mind.

  • Good question. I haven't thoroughly read all the other answers.

    Perhaps the shotgun approach isn't ideal. The campaign should be targeted differently. There's a lot of ignorance out there, and some people wont be told. We all know at least one. Others are more receptive. Intelligence, intellect, compassion are no clues as to how they will listen. There's a group we could call "Wilfully Ignorant", and not just in this matter. Try Climate Change as a topic.

    I find closest family hardest. My daughter has MS (link there?) and knows from experience, but mum has her head in the sand. Just doesn't understand. What never ceases to astound me, but doesn't surprise me, is that chief execs sign all sorts of documents (like we're great and compassionate employers/environmentalists, yeah, yeah, yeah, they may be. Shame this doesn't percolate into the lower management, like charge hands, the ones with the power to make our life a misery but with a little thought we could get on much better. How many of us have been involved in or heard of the light turning off exercise? At work a group of lecturers, staff and students went round one Easter turning off lights and monitors and any else unnecessary. They reckoned they saved £12000 in 1 fell swoop. However, staff are as bad at leaving lights and computers on - still. The post cupboard is only opened to put something in or take something out. 1 hour a week? yet the light is on 24/7. I try to target my efforts where it might help, so I don't talk about it in the pub, but I ill take time to explain to someone who asks or needs to know.

    I'm running a cycling stall this Sunday. Most visitors will want local cycle maps. Some will want to talk cycling and Sustrans. But I don't want to speak to members and supporters. I can do that the rest of the year. The ones I need probably wont come past. Last year I think I had 2 worth while conversations. (so why do I still do it - I don't know :P ) I suppose even 2 who hear the message are better than none.

    So I don't waste my precious energy preaching all round, but channel that where it may have most effect.

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