I’m not one for marking anniversaries, not sad ones. I don’t know how many years ago my Nan passed, or the dates that I was diagnosed with Ehlers-Danlos syndrome (EDS) or Charcot Marie Tooth Disease (CMT), I would have to work it out by roughly how old the children were at the time. I just don’t hold dates in my mind like that, I have even been known to forget my wedding anniversary 😉
But feelings… I remember them and can be catapulted back to those days like they were yesterday.
This weeks marks three years since the the Grenfell Tower fire which for us marks three years since my son was diagnosed with Myalgic Encephalomyelitis/Chronic fatigue syndrome (ME/ CFS) I hate that I associate his diagnosis with this tragedy. Two awful things forever intertwined.
At this point he had been out of school for nearly 6 months and was barley awake for four hours a day, we struggled to get a decent meal in him at all. He was dizzy, tachy, and when he was awake he barely had the energy to hold a conversation. I was up early, worrying about the journey into London, worrying about being able to wake him, keep him awake, where we would park the car, the outcome, treatments – all the scenarios going around in my mind.
For us a logistical nightmare unfolded. No longer able to drive into London as the A40 was closed we had to negotiate a poorly boy with no wheelchair into London on public transport.
All our hopes were pinned this appointment and the options it may bring to treat our son.
The realisation came on the journey home, his new diagnosis did not come with a well thought out treatment plan, any treatment in fact. Just praise for how well we had been caring for him. No medical interventions, just a six monthly check in. Nothing, just nothing we could do better to make him well.
Over the days that followed the nation got to grips with the fact the Grenfell had devastated so many lives we had to come to terms with the fact that there was nothing we could do to help our son.
Over the months that followed I learnt that prognosis for young people diagnosed with ME is pretty rubbish. More money has been spent on research into a cure for male pattern baldness that in has for M.E. research in recent years, yet it is the biggest cause of long term absence from school. Period.
Among the 885 individual sickness records received in 6 LEAs, ME/CFS was by far the commonest cause (42% overall, 33% in staff and 51% in pupils) followed by: cancer and leukaemia (23%); general medical or surgical conditions (13%); musculo-skeletal problems (12%); psychiatric disturbance and virus infections (5% each).Long Term Sickness Absence due to ME/CFS in UK Schools:An Epidemiological Study With Medical and Educational Implications
Elizabeth G Dowsett – Consultant Microbiologist
Jane Colby – Former Headteacher, Executive Director, Tymes Trust
The only treatments recommended by the National Institute for Health and Care Excellence (NICE) are cognitive behaviour therapy (CBT), and graded exercise therapy (GET) and both have been shown to cause harm.
Social service interventions are also disproportionately high.
“Some children with M.E. and their families are caught up in unnecessary, damaging and distressing child protection conferences and care proceedings because there is misunderstanding about M.E. amongst teachers, social workers, health workers and other professionals.”All Party Parliamentary Group on ME (2010)
We learnt to trust ourselves, that pushing him to meet the recommendations of the professionals in the early days made him more sick. We have learnt to relax, let him rest when he needs to rest and do a little of what he loves when he can – and we don’t sweat it if he can’t. That keeping up with studies is good to keep his mind ticking over, but not to the point that he crashes. Learning can happen at any age and does not have to happen in a school building to be effective. That pacing is his friend but pushing through is not. That good food is healing and hydration is important (especially when you have PoTS too).
But most of all, that family is everything.
We are lucky, our son does not fall in the severe ME category now. Most days he has moderate symptoms. Falling often somewhere between 60 -70% on the functional ability scale. To put this in perspective this means that…
“Part time study at school/college is very tiring, and may be restricting social life. With careful pacing of activities and rest periods, you may discover windows of time during the day when you feelFunctional ability scale – Action for M.E.
We are working toward the day when he may be able to reintegrate into college without crashing.
As a parent in the beginning I would have told you that the hardest thing that M.E. had stolen from him was his friendships, his normal, but those things have never bothered him – he says that he can’t really remember what going to a normal high school was like anyway, so over time I have cared less for this missing part of his life. For me now, the most heartbreaking thing that ME has taken from him are his memories. While part of me is pleased that he can not remember the worst times in his illness, he also can not remember birthdays, Christmases or family holidays that we all enjoyed. His memories now consist of the stories told of these times and the photos that adorn the walls.
So believe me when I say how proud I am that he has managed to study towards any GCSE’s this year. For us, his results this August, whatever they are, will surpass any student has has managed to secure 10 grade 9’s.
Today the All Party Parliamentary Group on ME will be resuming work on their comprehensive report at a virtual meeting. This meeting will cover issues relating to children and adolescents with ME/CFS – including diagnosis, medical management, education and inappropriate social services interventions.
Important work indeed.