parentingcfs

Navigating adolescent CFS

Latest adolescent CFIDS research. October 17, 2011

Filed under: CFS Diagnosis,CFS Resources,CFS Treatments — parentingcfs @ 3:29 pm
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Last month the biennial IACFS/ME conference was held in Ottawa. It’s actually nail biting stuff for us waiting to hear what is tabled as it seems we are at a pivotal stage of research into this mysterious illness and , of course, we are so personally invested and holding our breath constantly (okay not literally but you know what I mean!) in the hope of hearing of new, life changing developments.

I’m not going to go into detail. A full summary provided by the great people at Research 1st  can be found here.

Suffice to say there is still no definite evidence as to causes or successful treatments. However there was some news on time frame. One of our Melbourne specialists Dr Katherine Rowe presented and spoke about her latest research into adolescents. As Dr Charles Lapp summarises on the Research 1st website – Bottom line:  within 5 years 60% reported recovery and at 12 years 88% reported recovery, although one-third were consciously monitoring their activity.  More than 95% were working or studying part or full time.  What helped them most to recover were symptom management, continuing social contact, physical activity, and engagement in education (the best predictor of outcome).  Massage and diet advice was helpful, but restrictive diets and supplements were not.’

It’s been really difficult to find studies of outcomes for adolescents. As I’ve mentioned previously there was a general feeling that adolescents had a greater chance of recovery than adults but the only actual data available stated that only somewhere around 30% recovered. (Sorry I’ve tried to find that source  and post again but I’m running out of time to get this post done before other mother stuff takes over. Anyhow let’s choose to ignore that more negative source now that Dr Rowe’s slightly more cheerful study is published!)

So we will focus hard on being one of the 60% that recovers within 5 years. How will we do this? By NOT focusing hard on achieving anything except happiness. Which we’ll achieve by not doing anything hard. Oh it’s all so confusing! But you get the idea I hope!

Okay, off to think about ‘nutritious but delicious’ dinners. Again. Yee haa!

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3 Responses to “Latest adolescent CFIDS research.”

  1. Sue Jackson Says:

    Hey, that is great news!

    I think in Jamie’s case, it’s the Lyme and co-infections that have set him so far back and are preventing him from improving.

    Dr. Bell has done some great studies on long-term outcomes for kids – he’s the world’s foremost expert in pediatric CFS, even though he is now mostly retired. Here’s the study:

    http://www.masscfids.org/index.php?start=8

    On this page, there is a link to a video of his presentation on the study, and a abstract and link to the actual article….ooops – the link to the full article isn’t working, but you can check out the video and the abstract. I can e-mail you a copy of his earlier 13-year follow-up study (this latest one was a 25-year follow-up).

    Sue

  2. Annie Says:

    On looking at this article Sue I remembered that I had read it just recently – I think because some of it got a bit too depressing I blocked it out!!!! Who knows how the human mind works! Still I know we have to deal with worse case scenarios in order to make people/governments understand how important it is to solve this mystery. Still I think in my head I’ll stick with the 60 and 88% for now…….. (in the sand perhaps?!)
    On another note I’m constantly struck by how many people seem to have CFS AND Lyme. Is this because in many the Lyme triggered the CFS before the Lyme was diagnosed? Please excuse my ignorance.

  3. […] 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. […]


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