Sympathetic coverage of M.E. and Fibromyalgia in ‘The Sun’, 29 March 2012

March 29, 2012


From ‘The Sun', 29 March 2012

Sophie was a lively little girl… now she’s so weak she can’t even text

Robbed of life: Heartbreaking victims of ME and fibromyalgia

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.


12 thoughts on “Sympathetic coverage of M.E. and Fibromyalgia in ‘The Sun’, 29 March 2012”

  1. Sympathetic coverage indeed in Britain’s best-selling newspaper today. It was prompted when Nicki Strong of the ME Association and and son Jamie 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.

  2. Thank you, Jamie and Nikki for doing all that – such telling journalism has resulted. Well done; we all stand to benefit. Brilliant.

    (I wonder if Rod Liddle has read the article?)

  3. Well done Nicki Strong for for getting this article into the Newspaper. reading Jamie’s story and seeing that he was used to cycling around Richmond Park a Lyme endemic area I do hope he has been throughly checked out for Lyme Disease- Jamie’s list of symptoms sound very similar to my own.
    However you need to look at Lyme Disease Action for information because nHS tests fro lyme can miss more than 50% of cases and rarely can one find an experienced doctor in treating Lyme. Sam Stosur International tennis player saw 5 doctors around your area none of which were able to diagnose her she eventually was diagnosed with Lyme in US and treated with long term antibiotics.
    Through chat line Eurolyme I have met many people who have been diagnosed with Lyme and making a good recovery many have been to Breakspear hospital where they specialise in many illnesses including ME/CFS but are finding lots of cases test positive for Lyme Disease.
    I was diagnosed with ME/CFS and it took 4 years to diagnose me with Lyme despite my history of attending surgery with bites ( can be as small as a poppy seed) rashes ( not everyone gets those) and summer flu’ before a chronic condition developed.
    Thankfully I have recovered my health and my life despite being retired early from the Civil Service on Ill health grounds.
    The science is still evolving that shows Lyme to be a far more complex disease than HPA following outdated IDSA guidelines acknowledges.
    Research done in endemic areas in US show that about 1/3 of ME/CFS have Lyme and respond to antibiotics ( research about Herx effect though which is a deterioration of symptoms within a few days of taking antibiotics often mistaken for a allergic reaction).
    Do some research and do not believe everything doctors say figure out what helps you with the help of doctors NHS and private.

  4. Thanks everyone for the feedback. We are relieved and pleased the article is sympathetic. Our heartfelt thanks go to Sophie and her family.

    As Tony has said I took the Voices from the Shadows DVD and the Lost Voices book (about severe sufferers) up to the News International offices at Wapping along with a letter in which I challenged Rod Liddle to spend an hour of his time watching the DVD and then to not change his mind that ME was “not very serious” etc. I received an email response from the Deputy Features Editor, but don’t know if Mr Liddle himself got to see any of the material.

    Anyway, we’re grateful to The Sun and the Health Editor, Lynsey Haywood for running this article. We hope The Sun’s online version gets lots of positive feedback as this will encourage them to revisit the topic, and possibly other media to follow suit.

    Our thanks also go to Natalie Boulton and Josh Biggs for producing such effective communication tools, the Voices from the Shadows DVD in particular. I urge everyone to buy a copy/copies and give/lend it to enlighten people.

    I think the more us parents and carers come out of the shadows and speak up about this dreadful illness, the more attitudes will start to change.

    Joanne, thank you for the suggestion about Lyme Disease. Yes Jamie was indeed diagnosed with this too via Breakspear but sadly the treatment did not lead to any lasting improvement. (He has also done the Lightning Process which we think ultimately led to his symptoms becoming far worse two and half years ago.)

    1. Thank you Nicki for your reply to me. I am pleased to hear that Jamie was checked for Lyme Disease and realise that many are not so fortunate as I in making such an excellent recovery.

      In my case I was on antibiotics for the better part of four years and yes I know antibiotics are not good for you but when suffering such horrendous ill health and antibiotics improve ones symptoms but deteriorate off them then of course we are going to continue taking what helps us. It is now a year since stopping antibiotics and for the first time I have had no deterioration of my arthritis/ muscle weakness or fatigue.
      The resent findings in the Non human primate monkey study shows what some patients experience – 1 month of IV antibiotics and 2 months of Doxycycline failed to clear all the infection and spirochetes were harvested from vital organs. This turns on it’s head the current view that a couple of weeks antibiotics is cure all for Lyme disease.
      Lyme Disease is rarely just one Borrelia infection and doctors are finding a host of other co infections which also need careful treating.
      As you so rightly advocate for we need bio medical research now.
      However that is not soon enough for all our loved ones.
      When UK Doctors and Consultants take their families to US to consult with ILADS doctors it rather tells us something.

      One of the Lyme Doctors most highly thought of Dr Richard Horowitz says ‘It is so much more than Lyme Disease’ his description is MCIDS Multiple Chronic Infectious Disease Syndrome.
      For anyone else reading these comments UK Charity Lyme Disease Action http://www.lymediseaseaction.org.uk/ are currently working with Dept of Health and James Lind Alliance looking into available research studies. It will be interesting to hear their findings. LDA have lots of useful information on their website including alternate views over diagnosis and treatment.

  5. 11.30pm, 29th March:

    46 comments now up at the Sun website, including this one from Richard Senior:

    My wife died of CFS/ME in January 2003. Officially, recorded by the coroner. Having endured decades of being ignored by the medical profession and/or being prescibed the wrong drugs, she found herself unable to eat anything without becoming seriously ill. There was nothing left for her to eat. It took her 53 heartbreaking days to die, aged 60. Hospices, it seems, are only for cancer patients; Annabel had to die at home, in pain and great distress. I was there.

  6. well done to everyone involved.

    I have been hesitating about getting a copy of the DVD the next time I have some spare money I will buy one and try to think somebody to give it to stop

    it was so nice to see this horrible illness reported in a truthful way thank you so much for all your hard work.

  7. Thank you, Nicki and Jamie. Tony, I remember reading about Richard Senior’s wife in ME Essential a few years ago. How tragic that people are still losing their lives due to this wretched illness!

  8. We were pleased and relieved that the article was sensitively portrayed. Our very best wishes to Nicki and Jamie.

    We have yet to get a copy of the DVD, don’t think we could cope with watching it right now.

    Very sad to hear about Richard’s wife. Sophie also is unable to eat anything due to increasing intolerance to all foods and she was admitted to hospital last May for NG tube feeding, she is now on an elemental feed and struggling with this now, so
    frightening. This illness is so dreadful and especially when it affects children and young people.

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