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.