Harmful approach to CFS

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by CFS.ME Mum on Sat Aug 17, 2013 1:41 pm

Harmful approach to CFS

Dear Dr Shepherd in a post entitled "GP advice" you mentioned the advice given was potentially harmful.

We were given very similar advice to the person who posted that question regarding our son. He was 6 when he had glandular fever (confirmed by a blood test), then he had 6 months of requiring iron supplements for iron deficiency anaemia. After 9 months from the initial glandular fever onset he was, we now know, showing clear boom and bust in the extreme, repeatedly left by his school collapsed in exhaustion in the classroom, and medically our GP told us that the best thing for him would be to push through. The GP even used the words chronic fatigue and said "Well, even if he has chronic fatigue the best thing will be to push through." As you rightly say the advice is potentially harmful. He was severely affected for over a year following this and is now still severe cognitively although thankfully with regards to other symptoms they are more on the moderate scale of things. He has had so much unnecessary extra pain and suffering due to the wrong advice. And I wonder if permanent harm has been done by this wrong approach. We hope that due to his young age that with a better approach now in place he will recuperate.

Can I ask why there is so little understanding of CFS/ME in the medical profession? Particularly with GPs who are a patients first port of call? I know the ME Association have recently produced a booklet for GPs written to them as clinicians and we have requested a copy for our current GP - not the same GP as above. Are GPs trained to spot the signs? I will always be shocked by the first GP's advice, especially having now learnt so much more about the condition including glandular fever being recognised as a trigger for CFS/ME. And will always feel sad and let down. It seems our situation is not an isolated case and I wonder why is it so hard to get the medical recognition and support.

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by Richio76 on Sat Aug 17, 2013 1:54 pm

Re: Harmful approach to CFS

Twenty years of psychiatric dominance over the condition, the view that it's a behavioural disorder and the simple fact that young medics get little or no training in CFS/me at all. And there is still a hardcore of GPs and other medics who simply don't believe it is an illness at all.

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Dr Charles Shepherd
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by Dr Charles Shepherd on Sat Aug 17, 2013 3:32 pm

Re: Harmful approach to CFS

Regarding children and adolescents with ME/CFS:

Although it is now a well established fact that ME/CFS can affect both primary and secondary school children, and has been found in a published research study to be one of the commonest causes of long term sickness absence in school, there is still a long way to go in trying to makes sure that children receive an early and accurate diagnosis and that they are referred to a paediatrician.

There is, in fact, a great deal that can be done to help/support children with ME/CFS - not just with medical management but also helping with education along with the social and psychological problems that can occur when a child has to cope with a complex disabling illness like this

Early diagnosis and good management in children also appears to have a very positive effect on outcome

We are doing our best at The MEA to educate the medical profession about ME/CFS but much more can and should be done by medical schools (for medical students) and in postgraduate education (for doctors who are qualified)

We are sending out free copies of the MEA purple booklet - 52 pages of fully referenced info on research, clinical assessment and management - to doctors throughout the UK. Over 2,000 copies dispatched so far.

This can be arranged by contacting Gill Briody at MEA HQ

MEA website: http://www.meassociation.org.uk
Dr Charles Shepherd
MB BS, Honorary Medical Adviser, ME Association

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