Navigating adolescent CFS

ME/CFS Awareness Week 2012 Seminar Melbourne May 5, 2012

Hi all!

A few people have commented about the lack of new posts from me. It’s due to the fact that as my girl is able to function well enough to attend school and is in quite a happy place I am able to be less obsessive about ME/CFS. It’s a liberation I don’t take lightly and a huge amount of my time is still spent reading and talking about the subject but I guess there is less need for me to vent online as I am not as sad and frustrated. Also my wonderful online support group now has 80 members and I tend to go there to vent.

So, why today’s post? As some of you will know May 5th to 12th is ME/CFS Awareness Week. May 12th was Florence Nightingale’s birthday. She is thought to have suffered with ME/CFS after returning from the Crimean War. I have just spent 4 fascinating hours at an Awareness Week seminar run in Melbourne, listening to doctors talk about diagnosis, treatment and outcomes. I went thinking that if I found out one new thing that would be enough. I found out a lot more than that.

Firstly the Opening Address was given by Linley Frame, an Australian Olympic medallist in swimming. Her speech moved me to tears. Her sense of loss regarding swimming was so very close to what my daughter has lost (without reaching the Olympic heights!) that I was profoundly moved. It is not the competition that she misses most it is the way of being. I believe Linley has only recently begun speaking about her ME/CFS and is now an ambassador for the illness for which I am extremely glad.

The Keynote Address was given by Dr Sonya Marshall-Gradisnik, a world-class immunologist from Bond University (though soon to move to Griffith, partly so as to be connected to a hospital where they plan to run inpatient trials……very very interesting and supportive stuff) Dr Marshall-Gradisnik has already published groundbreaking data about CFS and this month her latest research regarding biomarkers will be published. In summary, and forgive my lack of detail as I am dealing with a both forgetful and unscientific mind…my own I’m referring to!….the research further expands the knowledge that the natural killer cells our bodies need to fight viruses and tumours are both lacking in numbers and severely impaired in ME/CFS sufferers. One thing this explains is the bad reaction to vaccinations. (However the clinicians pointed out that each individual needs to weigh up the risks in not being vaccinated when travelling etc…ie: much worse to get HEP B than deal with the reaction…..) In addition, these cells are coded in our genes.  Critically, Dr Marshall-Gradisnik plans to do further research now, in partnership with Stanford based researchers in the U.S. on the hypothesis that we are dealing with an auto-immune disease.

Being privy to a not yet released paper was enough to make me already glad I was there, to also witness Dr Marshall-Gradisnik’s empathy and professionalism was a bonus.

Dr Donald Lewis, a GP specialising in CFS treatment in Melbourne, spoke next. If you are an adult looking for a CFS knowledgeable GP in the Melbourne area I’m guessing he’s the guy. He spoke with GPs in mind, giving tips on diagnosing and helping CFS sufferers. It was a comprehensive and detailed presentation that will best be captured when the seminar DVD is released (I’m making an assumption there as I saw there was one of last year’s seminar….). Dr Lewis viewed CFS as a tree. The roots were ‘a genetic predisposition + food intolerances’, when these roots were watered over and over again by stressors, you end up with the branches of OI, headaches, sleep problems etc. He also expressed this as an sensitive immune system being overstimulated continuously , for example by a food intolerance, until one significant event (eg, Glandular Fever) results in overload and ME/CFS. It made a lot of sense to us and highlighted what we have been aware of but trying to ignore whilst we enjoy our girl’s ability to attend school and function so much better. And that is that we have to work out the root cause of her CFS. As her dad is dairy sensitive and she has demonstrated sensitivity too, this will be where we will start until we get her tested. She chose to switch to soy milk months ago but refuses point blank to give up cheese so we have a challenging time ahead…especially as she needs to be able to make these decisions for herself and have control.

Dr Lewis also spoke about how the fight or flight response caused by production of adrenalin and , in CFS sufferers, oversensitivity to it IS THE SAME as an “anxious’ response and hence it is indisputable that ME/CFS is NOT a psychological illness but very clearly a physiological one. (But we’re all on board with that one anyway right!) He spoke about how people with ME/CFS have to become experts at managing stress and anxiety responses as their bodies are constantly under physical attack. Which confirmed what I have been telling my girl for months: ‘your body is tricking you into thinking there is something to worry about when there is actually not. It’s just a physical overreaction by your poor immune system’ or something along those lines. She also uses Rescue Remedy and deep breathing which works somewhat for her.

Our clinical pharmacologist, the amusing Dr Chris O’Callaghan spoke on Orthostatic Intolerance in isolation…ie; not specifically how it relates to CFS but what it is and why it happens and what can be done about it. As it is a major symptom for many CFS sufferers the talk was received with interest. Since we have already spoken in depth with Dr O’Callaghan there wasn’t much new here for us. He did however state categorically that exercise does NOT help all OI sufferers. (I think he said 50/50 but I can’t be sure)

After a tea break we then heard sleep specialist Dr David Cunnington talk about managing sleep and ME/CFS. As our girl’s sleep is under control thanks to magical melatonin (although a reminder to people that melatonin needs to be taken 12 hours before you mean to get up, which is a few hours before you actually go to bed. Our girl generally takes hers about 7 and then turns her light off at nine and is asleep by 9:30.) One thing Dr Cunnington mentioned which I wanted to pass on is that a) other sleep disorders can occur in people with CFS/ME b) they present differently and c) they have more impact because the body is already so sensitive. He particularly mentioned that a GP may ask someone if their partner says they snore and gasp/choke for breath while sleeping and if the answer is no the GP will say ‘not sleep apnea then’ when actually because ME/CFS sufferers bodies are so sensitive they will wake themselves (from sleep apnea) before these symptoms appear.

Dr Kathy Rowe, who we are lucky enough to have as our paediatric CFS specialist, spoke last to present her study that she previously presented in Ottawa and I have already discussed in this post.

All in all a very interesting afternoon. I spoke with a mum who attended this seminar 10 years ago and she said how much more positive she felt after today’s seminar. I felt the same. We are getting there. It’s just a slow process for those who are sick and their carers.

I’ve tried my best to report accurately on what I heard today but I will have missed much. My apologies to the speakers if I have misrepresented anything they’ve said and if, as a reader, you are particularly interested in any point please go directly to the research and practitioner. I may have got it wrong!


12 Responses to “ME/CFS Awareness Week 2012 Seminar Melbourne”

  1. Sue Jackson Says:

    Wow, what a wonderful conference, Annie!! And so great that you were able to attend. It sounds as though you have a great group of CFS experts there in Oz who are supporting real scientifc research and solid treatment options for ME/CFS sufferers – that is great!

    For me and many others with CFS, the CFS came first and THEN the food intolerances. I was perfectly healthy before CFS with no GI problems at all and drank lots of milk every day. It was only after getting CFS that I became dairy intolerant and developed GI problems. It makes sense because the immune system dysfunction is CFS causes our immune systems to over-react to both viruses and allergens (and to see previously “safe” things as allergens).

    Sounds like a very interesting and informative day! Thanks so much for sharing it!


    Live with CFS

    • parentingcfs Says:

      Hi Sue

      Yes I understand exactly what you are saying about the chicken and egg thing. I believe the theory proposed is that from birth your overactive immune system has had to react continuously and excessively every time you had (for example) dairy until some onset event overwhelmed the system.

      The statistics about the overrepresentation of people of Anglo/Irish inheritance in adolescent CFS (Kathy Rowe’s study of 1000…in a city where 150 languages are spoken at our Children’s Hospital) possibly fits this as milk and wheat are both so dominant in our diet.

      But yes, still no firm evidence, just another doctor trying to put the puzzle together. It makes sense to our family so worth exploring if I can persuade our girl……

      Thanks for your comment as aways!

  2. Jo Koehn Says:

    Thank you SO much for writing about this, Annie. It is incredibly helpful and I’ll look forward to hearing more. I’d love to get the DVD if/when it comes out so please let us know if you hear anything about it. I would SO love to go to a conference like this, even if it was just for the recognition that CFS is a life-altering illness. thanks again!

  3. Allyann Says:

    Thank you Annie for sharing your notes of the day. It sounds like it was well worth attending.

  4. Thanks Annie, this is one Mum would’ve loved to have been at. Great to hear things are progressing.


  5. Is goats/sheeps cheese less lactosy? Then she could still have manchego, fetta, haloumi etc.. (not sure where I got the idea of it being less lactosy, :/ just a thought)

    • parentingcfs Says:

      Hi Sarah. Yes thanks for the thought. Once we are sure of the allergy (need to get a referral etc etc) we will see a dietician and in the meantime probably cut it all out as good for her gut to have a complete break maybe? But I’ll look it up. Yes, I’m sure your mum would have got something out of this seminar. They are annual I believe. She’s very welcome on our Facebook group anytime. 80 of us on there now and lots of good supportive discussion….

  6. Who in Australia is available and wanting to speak to the media about this May 12???? Either in the organisations or not?

    Anyone know about media releases any groups are sending out etc?

    please let me know on
    turnitupmike AT gmail DOT com


  7. Very interesting reading, thanks for sharing. 🙂

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