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The SUN: Robbed of Life: Heartbreaking victims of ME and Fibromyalgia

Discussion in 'General ME/CFS News' started by Firestormm, Mar 29, 2012.

  1. Firestormm

    Firestormm Guest

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    MEA: 'Sympathetic coverage in Britain's biggest-selling newspaper today: paper was strongly briefed from the start by Nicki Strong, of the ME Association: http://www.thesun.co.uk/sol/homepag...tbreaking-victims-of-ME-and-fibromyalgia.html

    The Sun's interest was sparked when Nicki and Jamie Strong left a copy of the 'Voices from the Shadows' movie with their deputy features editor about three weeks ago. Nicki has been working hard with them since them.'


    Sophie was a lively little girl... now shes so weak she cant even text

    LITTLE is known about ME and even doctors have been accused of failing to take it seriously.

    But the reality is Myalgic Encephalopathy sometimes called Chronic Fatigue Syndrome is a severely debilitating illness affecting around 250,000 people in the UK.

    Symptoms include extreme exhaustion, muscle pain, headaches and poor concentration. Many sufferers can be bedridden for years. Fibromyalgia is a chronic condition where you suffer widespread pain and fatigue.

    As many as one in 25 people may suffer from it in Britain.

    Here, LYNSEY HAYWOOD speaks to three people who tell us why these two illnesses are far more serious than most people realise.

    Sophie, 17

    SOPHIE ELLIS has suffered from ME since she was nine. She can't even watch TV or send a text and is fed through a tube.

    She has not been downstairs in her house in Banbury, Oxon, for more than a year.

    She lives with dad Mark Ellis, 52, a financial adviser, and mum Karen, 52, her full-time carer. Mark says:

    When Sophie was nine she got a fairly typical virus which lasted two to three weeks.

    But she never really recovered.

    She suffered crippling gastric problems, heartburn and acid reflux, as well as a general lack of energy.

    The GPs we saw tried to deal with the symptoms rather than the root cause.

    As parents we had no knowledge of ME, so while seeing countless consultants we never thought to ask about it.

    We simply thought it was something people got in the Eighties and it made you feel like you had flu.

    We certainly didn't know you could treat it.

    Sophie was getting worse and worse to the point where she couldn't eat and was increasingly bedbound.

    Then, about two years ago, one consultant suggested ME and, after researching it ourselves, it all made sense.

    It took up to six years to get an accurate diagnosis but sadly, by then, having pushed herself so hard for six years, Sophie's batteries were completely run down.

    It felt like we'd missed our window of opportunity when we could have done something.

    Now, Karen has given up her job as a shelf-stacker at Sainsbury's to be her full-time carer.

    The slightest thing exhausts Sophie and because it's neurological, it affects every part of her body.

    She can't watch TV or use a laptop because she's light intolerant. It makes her dizzy or ill.

    She can't read more than a couple of times a day and she hasn't been downstairs for more than a year.

    We can't speak to her for more than a few minutes at a time because it drains her energy.

    Her room has to be dark and she needs help getting to the loo as she's too wobbly on her feet.

    She can read texts but can't type herself because her brain can't co-ordinate her fingers.

    Eating and chewing is now almost impossible for her, so she has a tube which feeds liquidised food through her nose, but she can drink herself.

    We're trying to step up the little achievements she can manage each day exposing her to a little more light, getting her to eat a little food herself.

    But if we push her too hard she relapses badly and we're back at square one.

    We can't have visitors to the house at all now because of any potential disruption. The best Karen and I can hope for in terms of our own lives is a walk and a coffee when Sophie's brother Matt, who is 29, comes round.

    This makes Sophie feel terribly guilty too ME impacts hugely on everyone.

    But throughout Sophie's been bright and cheerful, always with a smile on her face.

    Meeting other people through the Association of Young People with ME (AYME) has helped us realise we're not alone and often people do get better We've met people in their twenties who are leading largely normal, happy lives, who were once like Sophie is now.

    They are our inspiration to keep going.

    Jamie, 23

    JAMIE STRONG, from Kingston upon Thames, is determined to end the stigma surrounding ME. He says:

    Five years ago I regularly lapped the eight miles or so around Richmond Park on my bike. As a healthy, active 17-year-old, I enjoyed hanging out with my mates, running and pumping iron at the gym.

    Then in January 2007 my whole world came crashing down.

    Out of the blue I started having severe stomach pain with bleeding.

    I was diagnosed with probable gastroenteritis and, after a colonoscopy, ulcerative colitis.

    I started to get joint pain and brain fog.

    I struggled through my A-levels but by September I was having trouble standing.

    I was collapsing all over the place and had to postpone my place at university.

    Next I was diagnosed with Addison's disease, which is a lack of pituitary hormones in the body.

    I was given more medication, which helped me go off to the University of East Anglia, but my short-term memory was letting me down and I felt exhausted.

    Six weeks after I started, my parents had to come and take me home. It was then that I received the diagnosis of ME.

    ME is sometimes called chronic fatigue syndrome. But fatigue doesn't come close to what I have.

    Most mornings I wake up if I manage to sleep at all feeling more drained than when I went to bed.

    I often experience near-paralysis in my legs. If I manage to get myself in the bath, I then have to lie on the bath mat for 20 minutes before I can stand up.

    Going up the stairs feels like I'm climbing Everest.

    Even reading or a conversation can be too much for me now.

    When I try to keep going, the exhaustion can become so extreme that I feel as if I'm about to die. It's like my brain is on fire.

    I have burning muscle pain and painkillers bring little relief. When this happens, the only way to survive is to lie in a dark, silent room.

    I desperately miss friends my own age. They no longer see me since they don't understand why I can do so little or why the doctors can't help me.

    I've made contact with other young people with ME but mostly they are too ill to meet. I can leave the house once or twice a week if someone is taking me and I don't have to walk far. Sometimes I use a wheelchair.

    I've tried everything to get my health back alternative therapies, acupuncture, diet, supplements, cognitive behavioural therapy, increasing activity levels, relaxation techniques, meditation, resting, pacing and medication.

    To live this life with no end in sight feels like a living death.

    If only people would realise this is a real, devastating physical illness, then those with ME wouldn't feel so abandoned, dismissed and belittled.

    We need the Government to treat this as the serious illness it is, to educate doctors and to instigate more research so that proper treatments possibly a cure can be found.

    Linda, 52

    OCCUPATIONAL therapist Linda Horncastle was crippled by pain caused by fibromyalgia for nearly two decades.

    She even contemplated suicide to spare her family the burden of looking after her.

    Linda, from Seer Green, Bucks, says:

    I first fell ill aged 27, after the birth of my son Matthew. I saw a specialist who said it was a trapped nerve and gave me pain-killers, but it didn't get any better.

    The pain spread across to my other shoulder, down my back and I felt so utterly tired all the time.

    Four years after Matthew was born I had my second son, Steven, by which time I couldn't lift either of them up.

    If they wanted a hug, they'd have to climb on to my knees.

    I was completely dependent on my husband David, now 52, and friends to help me with the kids. I finally found out what was wrong with me when I was 33.

    We were living in France and a GP referred me to a rheumatologist who said I had fibromyalgia.

    He advised I visit some thermal baths and make changes to my diet. But then David's job was transferred back to the UK and the stress of moving made my symptoms worse.

    I was housebound for days on end. I didn't have the energy to do the school run and I was in constant, agonising pain.

    My family was suffering so much because of me.

    David had to do all the cooking and housework. Normal things such as family holidays and after-school clubs weren't an option for Matthew and Steven.

    I felt so guilty I twice contemplated suicide, thinking they'd all be better off without me.

    I'd lost almost all my friends because I couldn't leave the house. I had panic attacks whenever I went on public transport.

    The turning point was reading an article by a physiotherapist who'd been similarly debilitated by fibromyalgia.

    She explained how she had got her life back and even started work again with stretching exercises combined with cutting out sugar, caffeine and gluten from her diet.

    I made all these changes and went to a pain clinic where I learnt relaxation techniques so I didn't burn myself out.

    My symptoms improved by around 40 per cent, but I was still far from well again. A doctor suggested I try a device called an Alpha-Stim.

    This uses a small electrical current to produce alpha waves which stop my brain getting more pain signals than it should.

    By the end of the second week of using it I was feeling much better. I slept well for the first time in decades and my energy and pain levels improved.

    I even started work again in 2010, which I never in a million years thought would happen.

    For more information see ukfibromyalgia.com and meassociation.org.uk.'

    Note: Unfortunately The Sun doesn't allow copying of it's pictures.
     
  2. Enid

    Enid Senior Member

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    That's good to see in the Sun - Firestormm - exactly what it's really like instead of the way things have been distorted by the psychos and their GET & CBT.
     
  3. Firestormm

    Firestormm Guest

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    Yep. Right back at yer Liddle - you muppet! Good to see Voices from the Shadows making such an impact and it can't have been easy for Nicky and Jamie to get this feature out of the Sun. So well done to them too!
     
  4. taniaaust1

    taniaaust1

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    Great to see a decent story on this illness for a change.

    Ive always believed that leaving books on peoples stories (maybe an publisher is a bookworm and may read it) or something which can be watched may be the way to go to get the medias attention...

    seems this did pay off :) well done Nicki and Jamie strong and those who made "voices from the shadows"

    scary.. I think the child would know herself when she's well enough to be doing more. No one else can guage this for us. I'd think the added pressures put onto her, would only hinder her recovery.

    No one who hasnt had it cant understand how things like light intolerance affects us etc.. exposing her to more then she's really ready for.. no doubt would cause her some stress and pain etc.

    It would be so hard too for a child to know your parents want so much for you to be better and have pressure put on you around that while wanting to please them, so probably is unintentionally encouraged to over do.

    I really wish the parents could have some therapy in listening to the child (what they said sounds to be a form of GET) .. she knows her body more then they would. Why go exposing a ME child to stressors even if only a little more each day, its cruel and playing with her health.
     
  5. SilverbladeTE

    SilverbladeTE Senior Member

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    "The Sun" and the Murdoch Empire is in HUGE poo in the UK and elsewhere at the moment so they had best try not to act like Hitler's grandkids for a change :p
    This is part of "trying to look good to avoid being destroyed", I'd bet.
    The "Liddle" abusive article will have put them on course for serious legal hammerings

    New scandal allegedly links the Murdoch Empire to using pirates to destory rival companies....oh is't that hypocrisy for the ones largely behind the push to draconian copyright/IP etc laws via their government bought and paid for minions?


    So, good that the scumbag rag is putting this out...but for years they've vilified the disabled.
    Gonna take a lot more to undo the damage, like, full front page apologies.
     
  6. taniaaust1

    taniaaust1

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    If they did the article just to look good.. they would of choosen something far less controversal then ME. I really dont think they published to look good....and that they were genuinely affected by what they watched.
     
    allyb likes this.
  7. Jarod

    Jarod Senior Member

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    The world would be a much better place without the Murdoch Empire vampire squid strangling society with it's carefully crafted communications.

    Unfortunately the empires message is widely dispersed from literally hundreds of media outlets worldwide.
     
    garcia likes this.
  8. Firestormm

    Firestormm Guest

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    Before the thread goes off on one about other matters what did you think about the feature itself? Personally, I found it refreshing to see a severe patient being the main focus though I am not sure why Fibromyalgia was included particularly, and I don't have that diagnosis myself so can't really comment on that.

    The pictures of Sophie help I think and Jamie brings another perspective to the condition, a perspective that perhaps more people can associate with. Not necessarily with his pre-ME diagnoses (although that does demonstrate we have often more than one condition to manage) but with the pre-ME search for what might be the cause? Personally, I went through several years of medical opinion and inaction before reaching a diagnosis of Epilepsy and ME.

    Some have said: Why Encephalopathy and not Encephalomyelitis? Fair point. The former is recognised by NICE and preferred by some doctors as a diagnosis, the latter of course is a specific disease included by the WHO and generally preferred I guess by most patients. At least for this feature, chronic fatigue syndrome was in second place as an 'also ran' and not in the headline.
     
    allyb and justy like this.
  9. Yogi

    Yogi Senior Member

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    Nice to see that Sun print some truth and facts for once. Thank you Lynsey Haywood. Keep up the good work.
     
  10. Min

    Min Guest

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    great article

    Linda Horncastle has a financial interest in promoting alpha stim

    http://uk.linkedin.com/pub/linda-horncastle/46/79/19b

    Fibromyalgia was included because UK Fibromyalgia submitted a formal complaint to The Press Complaints Commission regarding Mr Rod Liddle's opinions on fibromyalgia in The Sun (which is still being considered). Part of their discussions was to request a more sympathetic piece in the newspaper to balance Mr Liddles invective.
     
  11. taniaaust1

    taniaaust1

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    In the comments for the article.. sadly there is a comment, from a guy who's wife died of ME (couldnt eat foods anymore and was left to die. Cause of death was put as being from ME). His story of his wife is actually more horrible then I just said.

    There must be really quite a lot of deaths from this disease which go unknown. Im glad that people are bravely speaking out more nowdays about the goings on with this illness.
     
    Firestormm likes this.
  12. Dx Revision Watch

    Dx Revision Watch Dx Revision Watch no longer posts

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    The article gives a figure of around 250,000 UK sufferers but then claims that as many as 1 in 25 (4%) may be affected. I have raised this discrepancy on the MEA's Facebook Wall, where this article is also being discussed. Dr Charles Shepherd (Trustee and Honorary Medical Adviser to MEA) has responded:

    "The prevalence figure we consistently use, based on an overview of current research evidence, is somewhere between 2 and 5 per 1000 of the population. Or somewhere around 250,000 people in total in the UK. I don't know whether The Sun made a mistake here - we were not given an opportunity to comment on the 'factual' content of this item."

    (The CMO's Working Group Report 2002, cited a prevalence rate of 0.2%-0.4% based on non UK figures, in the absence of UK epidemiological studies.)


    A note about the incorrect use of the word "somatic" in one of the comments posted beneath this Sun article.

    "Somatic" means "bodily", "of the body", "pertaining to the body" or "affecting the body" as opposed to the mind or psyche. A "somatic symptom" means a "bodily symptom" or a "physical symptom" - the word is not synonymous with "psychosomatic."


    Suzy Chapman
     
  13. SilverbladeTE

    SilverbladeTE Senior Member

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    It is not impossible that that is true :)

    However, given the vile, abusive crap that newspaper gets up to, the stuff that's been exposed about them, it's also far more likely that as I and Min said too, they are trying to avoid serious legal repurcussions for that abominably wicked article by that goat scroggling Liddle! :p

    (and "scroggling" isn't as bad as it sounds, before a mod gets a connipition fit, hehe)
     
    anne_likes_red and Min like this.
  14. PhoenixDown

    PhoenixDown Senior Member

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    Don't even get me started on this. It's not about understanding it's about belief. The average person doesn't understand AIDS or cancer either, but they believe them to be real and also non-behavioural disorders. I understand they are young and want to live their lives but but you wouldn't stop going round to your cancer friend's house because you "don't understand it".
     
  15. Enid

    Enid Senior Member

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    Do we need some clarification - if somatic is bodily then psychosomatic sounds like a contradiction in terms.
     
  16. Firestormm

    Firestormm Guest

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    Was reading (or trying to read) a paper the other day which introduced a 'new' term: physio-somatic just so there was no misunderstanding :D

    'This paper reviews the evidence that such symptoms are organically based. We use the term physio-somatic to describe these symptoms.'
     

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  17. Enid

    Enid Senior Member

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    Nice find Firestormm - :Sign giggle: A few "text" books and people need updating then ??
     

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