Navigating adolescent CFS

Dr Rosamund Vallings MNZM, MB BS April 29, 2013

Filed under: CFS Symptoms,CFS Treatments — parentingcfs @ 12:26 pm
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Last weekend I was fortunate enough to attend a seminar given by Dr Vallings here in Melbourne.

Dr Vallings is a New Zealand GP who was a medical student in London in the 60s. Many of you will have heard of the epidemic at the Royal Free Hospital there in 1955 which is one of the known cluster outbreaks of Myalgic Encephalomyelitis aka Chronic Fatigue Syndrome aka Royal Free disease. As a student, Dr Vallings “stood at bedsides” of the many hospital staff that remained chronically ill from this outbreak and studied this disease as a small part of her curriculum. In NZ her practice has become a beacon of light to many CFS/ME sufferers.

As she explained at the seminar, she decided to write her book “Chronic Fatigue Syndrome M.E. Symptoms Diagnosis Management” so that she could retire. In reality, the book has had the opposite effect, with her expertise becoming even more sought after by patients and colleagues alike.

I can thoroughly recommend the book. As you know I have been reading widely about CFS/ME since my daughter’s illness was diagnosed 2 years ago. Yet there is much in the book that is very helpful information for patients, practitioners and carers.

Dr Vallings talked for more than two hours (with a break for the poor CFS/ME sufferers in attendance in particular) and I felt we still only scratched the surface of her knowledge!

These are some of the things I learnt (or relearnt!) last Saturday: ( Whilst I do not have CFS/ME, my brain is older than it was and I don’t have a science degree. Any mistakes are mine entirely and none of this information should be taken as medical advice)

– The ratio of females to males affected appears to be more like 3:2 than the 5:1 previously believed.

– The severity of illness depends on the immune cascade

– Symptoms of relapse (and crashes) tend to mimic symptoms of the initial infectious trigger. ie; if the trigger was glandular fever/mono symptoms such as swollen glands etc will reoccur)

– In people with CFS (PWCs) the immune system is overactive and it is likely that the natural killer cells wear out.

– Slow gastric emptying is a symptom caused by the blood pressure issues. The bloating many feel after a meal is, in many cases, a result of food sitting longer than it should and being swollen by consumption of liquid, therefore it’s better not to drink too much at mealtimes….

– Fibromyalgia is likely (going?) to be renamed Central Sensitisation Syndrome shortly.

– Avoid too much Vitamin C as this stimulates what is probably an already over stimulated immune system.

– A rotational approach to food is best ie; eat food types on a 3 or 4 day cycle.

As far as the difficult area of exercise goes Dr Vallings had this to say:

No exercise results in a poor outcome

Too much results in a relapse

It needs to be regular and ,wherever possible, outside.

It needs to start at the level a PWC could manage EVEN ON A CRASH DAY. If that means wiggling your fingers and toes in bed, that’s where you start. If that makes you crash, try wiggling only your toes, regularly. If that fails, try stretching only.

Little and often is the key. (In my mind I call it stop/start exercise and count it when my daughter chases her little niece and nephew around the room)

PWCs must prepare before exercise and rest after.

And finally, build SLOWLY and avoid crash and burn (particularly difficult with teenagers!)

As regards supplements:

Of course she said be careful and sceptical.

She discussed Vitamin D, Omega 3:6 ratio should be 2:1 if taken, Vitamin B12 injections often helpful, magnesium, CoQ10 and D Ribose can help some.

And, for all my dear cyber and real life friends who are parenting this horrid illness, I’d like to reassure you that Dr Vallings reiterated that our precious young ones (we were particularly talking about onset around 11 years) are highly likely to recover. 🙂

There is more in her book and she spoke about much more. If you have any particular questions please ask in the comment section and I will answer if I can.

I’d like to end on a positive note. Dr Vallings said that in the first 20 years that she saw CFS patients very little research was done. Then there was 5 years when some was done. And in the last few years much has been done. She said something like 100 pertinent studies are published in reputable journals every 3 months at the moment. Don’t give up hope, she said. For at least some of the subsets, the answers are not very far away at all.

Here’s hoping she’s right.


6 Responses to “Dr Rosamund Vallings MNZM, MB BS”

  1. Janet Warry Says:

    Thanks so much for this helpful info Annie. I’ll buy a copy of this book asap. Its a downside of living in the country, it would be great to be able to attend seminars like this. Have a good day.

    • parentingcfs Says:

      Glad it was helpful Janet. I really only skimmed the surface so I think you’ll find the book worthwhile. I’m not completely in sync with Dr V as regards food but I suspect some of the gut research is just so new it wasn’t on her radar when the book was published last year? Or maybe I’m completely wrong! Anyhow, do let me know what you think of the book. 🙂

  2. Janet Bryson Says:

    HI Annie – this morning, today I needed to hear all this wonderful info. I gave a big sigh after reading the part about our young ones coming through this. I filled up a bit, and I am thankful someone reminded me that that day will come. Take care of yourself and your kiddies. Thanks for your lovely blog. Have a good day!

    • parentingcfs Says:

      Oh so glad to help fill that space we get inside ourselves sometimes, Janet. I felt the same way at the seminar. We need hope. Thanks for letting me know! Hope your day turns out okay. Hugs.

  3. Marita Says:

    I’m fascinated by the mention of Fibromyalgia. Both my mum and brother have it, mum also has MS.

    Is it linked to CFS or do they share the same symptoms?

    Dad keeps warning me that MS and fibromyalgia have genetic links and I should watch out for the signs in myself and my children.

    • parentingcfs Says:

      Hi Marita. I’m so sorry to hear about your mum and brother. It’s a horrible illness. Yes, my understanding is that the only difference is that in FM pain is the dominant symptom whereas in CFS it is the weakness and fatigue. Both revolve around a sensitisation of the Central Nervous System which results in headaches, memory loss, difficulty with concentration, forgetfulness, depression, numbness and generalized weakness as well as the fatigue and joint pain already mentioned. also, clinically both diagnoses display:
      Reduced blood flow in the cerebral cortex and midbrain
      Suppression of the hypothalamic pituitary axis
      Disturbed Stage 4 sleep
      Reduced levels of growth hormone
      Lower than normal serotonin levels
      Evidence of a genetic component.
      We don’t yet know how they are connected but it looks like it. 70% of people with CFS also have FM. Thankfully my daughter experiences very little joint pain although my son is struggling with muscle pain as I’ve written. I am pinning my hopes on diet a bit at the moment. It seems that my son is highly dairy sensitive…but in a way that we wouldn’t have noticed if he hadn’t had an extended period without dairy whilst we were trying it for our daughter. He seems to deal better with exercise this weekend after taking him off yoghurt as well but it’s very early days. I’m reading Dr Terry Wahls book about food “Minding your mitochondria” at the moment. Highly recommended…. I’m interested to know what you have found with your girls and food and whether your mum and brother have changed their diets at all? Obviously there is some underlying reason for my children’s symptoms but if modifying their diet can help them function better it’s got to be worth a try. Still, what we really need is to know exactly what’s going on…. Sure hope you and your girls don’t develop any FM symptoms.

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