Daily Mirror article: "My body shut down" - Woman reveals her heartbreaking battle with Chronic Fatigue Syndrome

Andy

Andy

Senior Member (Voting rights)
Not terrible, I suppose.
As the driver in the car behind blasted his horn, I woke up with a jump and realised, to my horror, that I was at traffic lights and had fallen asleep at the wheel.

I’d always lived life to the full. I had a happy marriage, a beautiful home, two young children and a great social life. I was a fitness fanatic and always found time to go for a run in the morning or late at night. I never stopped.

Then in 1997, when I was 29 and my son, Edward, was a year old, we went on holiday to Florida and I had an excruciating headache and nausea on the flight. When we landed I was so delirious and the pain was so severe I could barely stand.

By the time we got to our hotel, my husband had to call the paramedics. They took me to hospital and I was given a high dosage of injections to help with the pain and sickness. It took a week for the pain and nausea to subside and the second week I just felt drugged, so we lost the whole of our two-week family holiday.

At 30, I started to get severe migraines. We’d just bought a house that needed renovating, which was a huge project, my daughter was only five months old at the time and I was also working around the clock, helping run the family IT business. The GP said, ‘You’re just tired,’ so I got on with it. Then in 2001, I contracted a virus. My head was blocked, I had sinus pain, a sore throat , swollen glands, my whole body ached and I couldn’t shake it off.
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http://www.mirror.co.uk/news/real-life-stories/my-body-shut-down-woman-11620598
 
Hmm..still the old 'I worked hard to beat my ME' story that the papers love, lifestyle and management. Green smoothies and gluten avoidance and no mention of PEM in the symptom list at the end.

Overall it's a good piece to convey the seriousness of the disease and is sympathetic ...just all,the BS about hypnotherapy and meditation and stress/diet that is a bit off putting for me.

Perhaps I've just become a bitter cynic?
 
What a shame. It was going so well until
... I started making regular green juices full of vegetables to cleanse my body and homemade soups.

It was very slow and gentle and I introduced things one at a time. I called it my ‘treatment programme’ and within weeks, I saw signs of improvement.

I realised stress was a huge trigger, so I started meditation and cranial sacral therapy. Within a few sessions I could actually stand and walk upstairs. It was incredible. I did Qi Gong, a form of Tai Chi, which built up energy in my body, and hypnotherapy, which put me in a more positive state of mind. I had never done any of these things before and the effects were huge...
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The article was really good until that point. Then it all got a bit deliciously Ella cranial sacral usual pseudo junk for me.

It took a lot of determination and I had a lot of relapses, but gradually, over 10 years, my symptoms reversed. I was so inspired, I trained to become a health practitioner and started a small support group from my kitchen table, which got funding from the National Lottery and grew into the charity, Salus.
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And now it's a bloody advert. I was wondering why a non-celebrity was writing about ME in the Mirror, now all is clear.

I’m nearly 50 now – and feel fantastic, but I’m still rebuilding my life even today.
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Super.

The Salus Foundation (https://www.salus.org.uk/) seems to have a "network of professionals" around Birmingham:

At Salus our activities adhere to NICE guidelines and the latest research in the field of CFS/ME and Fibromyalgia. Our own network of professionals provides advice, support and education through our range of daily activities. Support groups, education workshops, Qigong, relaxation and wellbeing sessions, walking groups (Pacing/GET) and meditation sessions take place in venues across Birmingham.

We support people to be responsible for their own health and wellbeing through a self-management approach and our education programmes include subjects such as nutrition, pacing, sleep strategies, immune support, and stress and pain management. Our wellbeing activities include relaxation and meditation, aromatherapy and how our thinking influences our lives.
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Sorry did I just see
walking groups (Pacing/GET)
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in amongst the usual list of silly nonsense?

This is what she did from 2002-2009, before starting the Salus Foundation:

  • Natural Therapist
    Body-Mind-Spirit
    März 2002 – März 2007 (5 Jahre 1 Monat)
    I was a successful company director and a mother of two when at the age of 34, my whole life changed. I had a multi-faceted, disabling condition called ME/CFS (Myalgic Encephalopathy / Chronic Fatigue Syndrome). After living a normal healthy life everything changed in my world and for my family.
    Disbelief and lack of empathy by health care providers resulted in finding my own recovery as I wasn’t going to let this illness beat me. I was extremely determined to find a way to get my life back. I accepted what was wrong and through research and understanding about the condition I started my recovery programme.
    In 2007 as part of my programme felt I needed to find my meaning and purpose in life again. Along within rebuilding my life with my family and friends I decided to find something I enjoyed and that had helped me with my own recovery. I started to study Iridology and Herbal Medicine. After qualifying I set up my own private practice to help others in need of support with their health. In 2009, I felt I had made a full recovery and decided to extend my support and education by setting up a charity, Salus Fatigue Foundation.
  • Iridologist / Herbal Medicine Practitioner
    Body-Mind-Spirit
    März 2007 – März 2009 (2 Jahre 1 Monat)
    Business Owner - Providing Alternative Therapies to private clients using a range of Healing, Herbal Medicine and Iridology:

    • Treating clients from a Medical centre and private home practice having referrals from GPs
    • Educational Wellbeing Days
    • Providing Wellbeing Retreats in Spain / UK
    • Teaching Wellbeing programmes in Primary schools for young people and teachers
    • Attending regular CPD courses / seminars to continue professional development
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From LinkedIn https://uk.linkedin.com/in/linda-jones-39401678
 
Melanie said:
It's terrible. The word "recovered" is always bad in relation to ME/CFS. Maybe "doing better" or can "do more but not healthy".

Really, these people that get better and tell the media, because of what they did do so much damage to millions who have tried everything for decades.
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I'd never heard of "iridology" before. Apparently, it's like phrenology, only for the iris. :rolleyes:

https://en.wikipedia.org/wiki/Iridology
Iridology_iris_eye_chart_left_mirror.jpg


It seems like her onset dates to a virus in 2001, but she doesn't say exactly when she started to improve. The problem is that some people do seem to improve/recover in the first five years after onset. I've seen percentages of "recovery" in that period ranging from 5 to 20%. People who improve in that window are very likely to attribute their improvement to whatever they were doing at the time, but Dr. Bell has said that he couldn't find anything that separated those who improved from those who did not.

I know some dismiss the idea that it's possible to improve/recover from "real" ME/CFS, but it seems to happen in adolescents, so why not in some portion of adults?

The cruel thing about articles like this is that they suggest there's a path to recovery out there, if you'll just follow some "common sense" advice.

They should say that recovery is a high-odds crap shoot - that this person was just lucky - and that there are no good studies showing how to improve your chances.
 
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Sometimes the worst people to help other sufferers are ones who have 'recovered' because they attribute their recovery to whatever quack treatment they happened to be trying at the time improved. It looks like this is one of these, and the whole article is an advertisement for her 'treatment'.
 
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