The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

From the Daily Mail

Discussion in 'General ME/CFS News' started by Snowdrop, May 15, 2014.

  1. Snowdrop

    Snowdrop Rebel without a biscuit

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    This article appeared in the Daily Mail Online yesterday:

    ME: how one woman found a cure that works for her
    by EMILY WILCOX, Daily Mail

    "The Government's working party into the best ways to manage ME is due to publish its report any day. At the same time, York University has carried out a review of all the treatments for an illness that still mystifies many doctors. Here Emily Wilcox, the 23-year-old daughter of Esther Rantzen, who was diagnosed with ME at the age of 17, reveals what she believes worked for her.

    When I was diagnosed with ME in 1995, it was a lottery if patients were seen by a doctor who believed it was an organic illness or by one who thought it was a psychiatric condition.



    I was lucky to be treated by a doctor who believed glandular fever was the trigger for my lethargy, pain and gradual loss of mobility. Other sufferers were not so lucky.



    Now, the medical establishment is finally coming to grips with the treatment of ME (myalgic encephalomyelitis or chronic fatigue syndrome), an illness that robs sufferers of years of active life.



    But more ground rules must be established or patients will be at the mercy of ignorant doctors or those who charge a fortune for alternative remedies with no proven benefit.



    With an estimated 150,000 sufferers in the country, I hoped that by telling my story I could demonstrate that the illness was real. So in 1996, while I was still well enough, I agreed to do Press conferences, interviews and photo-shoots, arguing that ME is a very real, physical illness.



    However, I did get sick of the role of being Esther Rantzen's daughter with ME. I knew enough was enough when my brother, Josh, started calling me a D-list celebrity cripple.



    Mum carried on campaigning, but I closed the door on the ME world and concentrated on getting better.



    But my strange tiredness grew until I was wheelchair bound and then, in 1998, hospitalised, unable to get out of bed, sit up or hold a book, living in a twilight world.



    During my deterioration, I felt weaker and the pain increased. I couldn't understand why such dreadful symptoms were dismissed in other ME sufferers by doctors across the country.



    Mum received about 6,000 letters from other parents, desperate to know who to turn to because their children were so ill.



    We heard of one girl who was thrown into a swimming pool in the belief that if her life was threatened her energy would return.



    There was a father who went to prison when he forcibly tried to stop his son being taken against his will into a psychiatric ward where he was put on a punitive regime to force him to do more. And when one family were told there was no conventional treatment, they took out a mortgage to pay for alternative remedies - but that didn't provide a cure, either.



    On the other hand, at the first meeting with my consultant, Professor Leslie Findley, he said ME is a self-correcting illness. Only 20 per cent of patients remain trapped in it for good. Of the remaining 80 per cent, 60 per cent make a complete return to health and the others have active lives, on condition they pace themselves.



    For a long time, I didn't believe these statistics, but now I am forced to admit that Professor Findley's optimism was justified. I have come back to life. I am so improved that I can work, use public transport - and even stay out late sometimes.



    The attitude to ME has gradually moved forward. When I was diagnosed, the illness was still being dismissed as 'yuppie flu'.



    I experienced this when I first went to a consultant complaining of tired-ness, pain in my neck and limbs, and that light hurt my eyes.



    The doctor told me to 'Pull your socks up and get back to school'. I did - and collapsed again two months later.



    The York University report concludes that the only treatments proven to show a positive effect on ME are cognitive behaviour therapy (CBT) and graded exercise. I have tried both and they contributed to my recovery. But patients must be careful because the treatments can make them worse.



    Cognitive behaviour therapy, a structured form of positive thinking taught by a trained therapist, is mistrusted by some ME sufferers. But as well as the physical symptoms of ME, there are other issues such as sleep loss, anxiety and fear. CBT tackles these and so can remove some of the barriers to recovery.



    After a couple of years living with ME, you are likely to feel gloomy. This happened to me and makes me sure that depression is a symptom, not a cause, of the illness.



    Graded exercise must be tailored to the individual patient's health. It can mean sitting up in bed, walking across a room more often during the day and building up your walking. This is a practice that has been used by my consultant for years at the National ME Centre in Essex.



    When I was bedbound, graded exercise at first meant being lifted from my bed to sit in a chair for 15 minutes a day. Over the next year, I built up my strength until I could walk around the house unaided.



    Sometimes, they reach this stage precisely because they have exercised inappropriately, perhaps doing aerobics to try to revive their energy when they needed to rest.



    In my case, when I first noticed my sluggishness, I sweated it out in the multi-gym but made myself only more achy and tired. In fact, gentle exercise started to stimulate my energy when I alternated it with half-hour rests throughout the day.



    There has been a change in attitude to ME. In the past, if I called a taxi and explained the reason for the wheelchair, the cabbie might guffaw: 'What, yuppie flu?'



    Now, they are more likely to cluck sympathetically and talk about their sister-in-law, uncle or neighbour who also has ME.



    But there are still horror stories. Some young children with ME are wrongly thought to be victims of abuse by their parents and end up on the at-risk register. Single parents are particularly vulnerable to being blamed unfairly for their children's illness.



    The modern medical attitude is to treat the physical and mental symptoms of ME without knowing the cause. Graded exercise rebuilds physical strength while CBT tackles the emotional problems.



    Some doctors say that CBT is not a magic pill that can cure you, and even if there was an instant cure, it would be a long road to recovery because chronic illness causes chronic handicap. They claim patients need time to regain confidence. I disagree.



    If, five years ago, someone had given me a magic pill that cured me totally, I would have put on my knee-length boots and joined my friends to dance the night away - leaving my anxiety and depression to languish on the sofa without me.



    As it is, my body has healed itself without much medical intervention. If only the doctors knew how.

    Contact the Association Of Young People With ME, tel: 01908 373 300; www.ayme. org.uk."

    It seems that the article is closed to comments.

    It also seems to be a recurring item, as there was a previous article here:

    http://www.dailymail.co.uk/health/article-1356316/At-I-discovered-secret-Emilys-14-lost-years-Esther-Rantzen.html
     
  2. Legendrew

    Legendrew

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    This article is a weird one, I agree with parts of the message but disagree strongly with others. I like the acknowledgement of the disease as a highly misunderstood entity which often leads to anxiety and depression as a result of the vast uncertainty it places upon you, and that those who do recover or at least improve do so over a prolonged period and very gradually. I'll leave picking out the clear problems in the article to others who I'm sure will be much more outraged about this piece than myself.
     
  3. A.B.

    A.B. Senior Member

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    It reads like written by a journalist that just took various bits and pieces of information and put them together in a hurry.
     
  4. Legendrew

    Legendrew

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    Hmm that was what I was thinking, there seems to be little flow in the article and I wouldn't be surprised it bits and pieces were copied and pasted from multiple different sources resulting in the conflicting views all in the same article.
     
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  5. peggy-sue

    peggy-sue

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    I thought Emily had now been properly diagnosed - with Chron's disease or Coeliac (sorry, can't remember which).
    She never had ME in the first place,
    which doesn't mean she didn't suffer from the label itself.:mad:
     
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  6. Wildcat

    Wildcat

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    .

    That is a very old article from late 2001 or early 2002. It refers the the Chief Medical Officers Working Group Report that was published in January 2002, and the York Review of Research.

    Old articles from the Mail remain online but don't show the date the article was published. That can be very confusing.


    Since that 2002 article there was the Mail article "Saved from a living death" (2006, I think) in which Emily Wilcox and her mother, celebrity Esther Rantzen, claimed that Emily had been cured by Lightning Process.

    Then in 2011 (as predicted by some patients) there, in the Mail, was yet another "Emily's cured" type article in which Esther said that Emily Had Ceoliac disease.

    .

    Personally I take all the "Emily's cured" articles with a very large pinch of salt.
    Esther Rantzen also did Lightning Process (can't remember what for, but not ME) and has been raving about it ever since.

    .
     
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  7. Snowdrop

    Snowdrop Rebel without a biscuit

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    Emil

    I feel the same. I'm glad she points out the abuse people have endured at the hands of the 'sink or swim' crowd. Also the organic nature of the illness.

    I think that it is rather 'craftily' crafted in that she provides us with things that are indisputable that there will be general agreement with (the above) and then gives us the CBT and GET stuff in such a way as it seems very rational.

    My real problem isn't with the GET as it's described. But if indeed she was bed bound and needed that level of help I suspect (but cannot confirm) that there was private paid help involved. To not say as much if it is the case is very misleading. Some of us expend more energy on minimal functioning than we can afford so how does one do GET then (although this was written for youth with ME so they (hopefully) do not have to fend for themselves much).

    If I recall correctly, the 2014 article did not mention the gluten sensitivity issues Ms Wilcox discovered and corrected that improved her health (see 2011 article link at bottom)

    It did nothing to explain the complexity of the illness and how it can be different for different people.

    Emily Wilcox is Esther Rantzen's daughter. Esther Rantzen is a journalist who writes for the 'mail'.
     
    Last edited: May 15, 2014
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  8. Snowdrop

    Snowdrop Rebel without a biscuit

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    I meant to mention that also. Another question of transparency. Was she paid to endorse LP?
    Yes, we really do want to know but I believe the article is closed to comment.
    I find the whole thing suspicious. It seems that over time they have become aware of the issues the community has and so have become more 'user friendly' by throwing us the bone 'it really is organic'. Thanks so much, like I didn't know. :rolleyes:

    There are definitely good things in the article but paired with the LP, CBT it's disingenuous.
     
    Last edited: May 15, 2014
  9. Snowdrop

    Snowdrop Rebel without a biscuit

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    Sorry, I also meant to say that if you read the 2011 article you will find the subtle suggestion that Ms Rantzen's daughter recovered due to her incredible will power. Alas, the rest of us just aren't as strong. :(
     
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  10. Min

    Min Guest

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    Emily has since been diagnosed as coeliac.

    She never had myalgic encephalomyelitis at all.

    She therefore never recovered using the Lightning Process.


    Esther Rantzen somehow remains president of AYME despite having repeatedly used her celebrity to promote LP on the grounds that it cured her daughter, when it did no such thing.

    AYME support the SMILE Trial of the Lightning Process on children. AfME have stated they see no reason to oppose it. All other nationwide UK ME charities have denounced it as unethical.

    http://meagenda.wordpress.com/2010/...htning-process-pilot-study-in-children-smile/
     
    Last edited: May 15, 2014
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  11. Min

    Min Guest

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  12. minkeygirl

    minkeygirl But I Look So Good.

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    Someone just told me to endure the intolerable heat we are having to "think cool thoughts". That makes about as much sense as will power curing a disease.

    I can't believe I wasted my energy reading that crap.
     
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  13. Snowdrop

    Snowdrop Rebel without a biscuit

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    Wildcat, barbc56 and Min like this.
  14. Snowdrop

    Snowdrop Rebel without a biscuit

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    barbc56 likes this.
  15. peggy-sue

    peggy-sue

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    I have only one use for the Daily Wail. I can think of no others.
    I get given second hand copies, which go in the bottom of the cats' box.:p
     
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  16. SDSue

    SDSue Southeast

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    Pardon me while I make lemonade out of lemons:

    The statistics she quotes, if we are to believe them, tell the story of misdiagnosis quite well:
    According to this:

    • 48 of 100 patients diagnosed with ME (60% of the remaining 80%) who make a "complete return to health" may represent misdiagnosis, as did Emily.
    • This leaves 52 of 100 patients who actually have ME.
    • 20 of the 52 (38%) actual ME patients remain "trapped in it for good".
    • 32 of the 52 (62%) actual ME patients must pace themselves and make partial recovery.
    So..... if we are to believe the statistics and believe that they represent misdiagnosis, we each have a 38% chance of being "trapped", but a better chance (62%) of making a partial recovery.
    For today, I'm going to delude myself not only into believing all the above, but believing that I'm going to be in the 62%. Who's with me?
     
  17. barbc56

    barbc56 Senior Member

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    :lol::rofl::rofl::rolleyes:

    Thanks, I needed that!

    When I first read the article, I thought the story sounded familiar and chalked it up to brain fog.

    Then I thought the mother was Esther Crawly who's doing the LP study!

    It's deja vu all over again. Both the article and my brain fog which is becoming all too familiar!

    Time for a nap! :sleep:
    Barb
     
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  18. taniaaust1

    taniaaust1 Senior Member

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    That would explain it. That article left me feeling like "what?".... confused...... Its all over the place and I couldnt even really get my head around properly what the take home points of it where supposed to be.
    .........

    edit.. I just finished reading it the comments here.. and see now it was written by someone who probably never had ME but rather had missed celiac disease. .. maybe that is why there was such a wash of truth and mistruth about ME in this article. The one who had it probably never really understood it.
     
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  19. taniaaust1

    taniaaust1 Senior Member

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    I'll have to try that next time Im having severe POTS trouble due to heat and someone is about to call an ambulance. Think cool thoughts.
    ..........

    When will the ridiculous stuff end. Maybe cancer patients should throw away all their treatment too and just think "cancer free".
     
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  20. Wildcat

    Wildcat

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    barbc56 wrote:
    ".....Then I thought the mother was Esther Crawly who's doing the LP study!"

    .
    LOL .... not surprising with ME brain and Esthers all over the place! But it gets worse. In fact Esther Rantzen (the mother of Emily Wilcox) is President of the children's charity AYME.... whose medical advisor is Esther Crawley.

    AYME officially supported the SMILE Trial Lightning study by Esther Crawley (are named in the protocol).
    The Research ethics committee, who gave the trial ethical approval, said that the endorsement by the charity was a factor considered when deciding ethical approval for SMILE.

    .
    And Phil Parker and LP trainers are STILL using that 2006 Mail article in their advertising, claiming that Emily Wilcox recovered from ME by doing Lightning.


    Millions of people read that article and still believe that Emily was 'cured ' by doing Lightning.


    Groan and triple Groan.
    .
     
    Last edited: May 15, 2014
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