Me

Me

Wednesday, 12 February 2014

A Call To Action #Fibromyalgia #M.E

I often meander along with this blog, writing what ever makes me want to tap the keys. Today I read something that made me both angry and terrified in equal measure.

NB: I have removed the link to the article that sparked this post - as it is now showing up as page not found. I dont know why. Despite this the blog stands - I have thought for a long time that its time to get both illnesses properly classified. 

In short the World Health Organisation classifies all known disorders and diseases. For a long time there has been a tussle between Research Psychiatrists and Research Scientists about the cause of both M.E and Fibromyalgia.

Are the illnesses really in our heads and we are just making it all up malingering and developing illness behaviours so people feel sorry for us in our depressive illness so convinced our we that our pain, fatigue and assorted neurological symptoms are real...as some notable and influential Research psychiatrists would have the world health community believe

Or

Are the illnesses really physical in nature - both neurological and physical malfunctions of the central and peripheral nervous system. That due to misfiring signals to the brain create very real symptoms that are not imagined but are as real as as any pain, fatigue and neurological. as the Research scientists are discovering the more they look into it.

let me say it clearly I'm not "mad" im ill and now im very very angry

The new classifications is in draft and we have until 2017 to speak with one voice to make sure that the science is heard, we are heard and once and for all we dispel the myth that we are all delusional layabouts that we just need to get off our backsides.

I am not for one minute saying we dont need support, or that psychological help has no part. But It is NOT the root cause - It is NOT a mental or behavioural disorder.

What can we do:

1. Research - pull it all together fully referenced in one place, including bloggers links etc
2. Lobby 
3. share our stories - our truths 
4. Galvanise the online community, our friends and loved ones to make a bloody big noise - that is coordinated and focused
5. leave a reply here if you are willing to help. Im just one scared angry voice - I cant do anything alone. Im not an academic, or even a very good writer. but surely if all the bloggers, academics, medics who believe in us and we make enough of a stink we might just finally break through and get what we deserve..

a true diagnosis and treatment that helps us manage these disabling illnesses  - even if the article is not as bad as it could be - there will be another scare, and if we dont do it then one day people like Professor Fink will win his argument that its really Bodily Distress Disorder (BDO) and the research will dry up, the breakthroughs end and once again we will be treated as people who make this shit up

As another well known campaigns slogan said so powerfully - Alone we whisper together we shout..lets shout but use evidence, reason and our stories to do it. xx


Thanks to spoonydoc for her great supportive blog http://loopys-rollingwiththepunches.blogspot.co.uk/2014/02/fibro-and-cfs-mental-disorders-who-must.html

17 comments:

  1. I wrote a blog post as soon as I heard about this. I don't have fibro, ME or CFS so it isn't a personal story. I simply lay out all the reasons why this decision is so wrong (particularly in view of recent research) and downright dangerous.
    It is only one voice but I hope it can help.
    http://loopys-rollingwiththepunches.blogspot.co.uk/2014/02/fibro-and-cfs-mental-disorders-who-must.html

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  2. Thank you lovely - every drop of support counts. Its very much appreciated x

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  3. http://www.ncl.ac.uk/press.office/press.release/item/you-and-me-working-together-to-discover-biological-causes-of-cfs-me

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    1. Thanks Beccy, The Newcastle research is very welcome. There is a study being done on the Isle of White too.

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  4. Count me in Dxxx http://ramblingsofafibrofoggedmind.wordpress.com

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  5. Hmm if the medics could come out from their silos to realise those with chronic Heath conditions are likely to be depressed and those with mental distress are more likely to be physically ill but this will be ignored

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    1. How very very true Annie, there is so little understanding or really asking us what matters. The resumption we are exaggerating is unhelpful

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  6. Agree entirely, we are made to feel like time wasters or we are given a label of depression, yes we get depressed but its because we cannot function normally, we have these odd symptoms that gps dont know what to call so we get labelled. Even family dont fully understand as its not always visible. I put off going to the gp because it gets me nowhere and is a waste of my energy, i have no faith that anyone will help, I dont mind them saying "I dont know" They dont have all the answers but I really would appreciate a good bedside manner , some kind words would go a long long way.

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  7. It is important to remember that the current WHO ICD 10 list ME as an illness of the nervous system even though so many psychs and docs ignore this. It is the changes in the beta draft ICD 11 to be published in 2017 that are unclear and possibly concerning,

    So although it is the case that none of the categories: PVFS, BME and CFS are currently displaying in the draft, there is insufficient evidence available at the moment that these three categories are not displaying because they are proposed to be retired for ICD-11 or are proposed to be subsumed under a single replacement category for ICD-10's Somatoform disorders.

    This is why, at the end of my detailed report:

    Update on classification of the ICD-10 G93.3 categories within the ICD-11 Beta draft

    http://wp.me/pKrrB-3IX

    I set out a number of speculative (but unconfirmed) reasons that might explain their current absence from the Beta drafting platform.

    It is not possible from the information currently available to assert, as your article does, that:

    "A draft World Health Organization (WHO) document specifying the new international classification of diseases (ICD), has labeled fibromyalgia and ME/CFS “mental and behavioral disorders.” system even though so many psychs and docs ignore this. It is the changes in the beta draft ICD 11 to be published in 2017 that are unclear and possibly concerning,

    The article was pulled as it was a misleading headline and there were some inaccuracies in the article itself, although I am grateful that the journalist made me more aware of the current situation. Suzy chapman of dx revision watch who has done a lot of work on the beta draft ICD 11 and ME etc has written on phoneix rising forum today clarifying things. She writes 'So although it is the case that none of the categories: PVFS, BME and CFS are currently displaying in the draft, there is insufficient evidence available at the moment that these three categories are not displaying because they are proposed to be retired for ICD-11 or are proposed to be subsumed under a single replacement category for ICD-10's Somatoform disorders.

    This is why, at the end of my detailed report:

    Update on classification of the ICD-10 G93.3 categories within the ICD-11 Beta draft

    http://wp.me/pKrrB-3IX

    I set out a number of speculative (but unconfirmed) reasons that might explain their current absence from the Beta drafting platform.

    It is not possible from the information currently available to assert, as your article does, that:

    "A draft World Health Organization (WHO) document specifying the new international classification of diseases (ICD), has labeled fibromyalgia and ME/CFS “mental and behavioral disorders.”'

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  8. Ps sorry should have written ME, fibro and CFS is listed in illnesses of nervous system. Think fibro is as well?

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  9. Sorry brain foggy. Paragraph 2 onwards should be in inverted commas as they were written today by Suzy chapman who has done a lot of work monitoring the beta draft ICD 11 on phoenix rising about the current situation, the article was pulled as misleading headline and some inaccuracies in article

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  10. Also WHO have just tweeted the following which is encouraging, although I know some psychs still are pushing for ME to be classed as a bodily distress disorder (not thankfully under the ICD classification if I have understood the tweet correctly). WHO have tweeted '@secretspartacus Fibromyalgia, ME/CFS are not included as Mental & Behavioural Disorders in ICD-10, there is no proposal to do so for ICD-11'

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    1. thsnks Prue for all that, if anuthing good hascome from this is that people like me who are not awareof it all had a big wake up call. ive felt for a long time that fibro in my case needs to be classified properly.

      need to find a way to make it easier to get our heads round so its not left to a few informed souls trying to inform the many...

      I really appreciate it

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    2. Thanks. Have amended blog post accordingly.

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  11. It was removed by the site owner. I too wrote a tweet or two about it. A mini rant on FB and G+. I *AM* mad about it. No one should be locked up because they have unexplainable pain. No one.

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  12. Whatever you want from me - you've got it x

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Happy to have thoughtful, funny or imformative comments..abusive crap will be deleted