ME Awareness: What has changed since my daughter Merryn died from ME? Clare Norton | 05 May 2019

 

Clare Norton, 05 May 2019.

As I look back it is now nearly two years since our darling Merryn died and one year since her inquest which ruled her death was due to Severe M.E.

Merryn Crofts who died from severe M.E.

We hoped this ruling would influence other coroners, doctors and medical professionals to recognise how serious M.E. is – and that it can be fatal.

It is shocking that Merryn is only the second person in the UK with M.E. as the official cause of death – shocking because there is no doubt others have died as a result this cruel disease.

I was recently asked if Merryn was diagnosed now – eight years on – do I think things would be different, would treatment be better, and the stigma improved? Sadly, my answer was ‘no’.

“We need medical professionals to realise M.E. kills. For this to happen we need more biomedical research, which in turn requires more funding.”  

“To get increased funding we need the people in power to recognise how serious M.E. is, and so the vicious circle continues.”

Clare Norton.

Merryn Crofts died aged just 21 after battling ME.

Only this week I know of two families suffering from the lack of knowledge and stigma attached to ME. One whose mother is being accused of fabricating the illness and the daughter threatened with being sectioned.

The other family are being threatened with fines for non-attendance when their daughter is too ill to attend school every day.

Two desperate families being let down by services which should be helping and supporting them, all because of the lack of knowledge about M.E.

I feel their pain as I remember our desperate fight and the sheer horror of seeing your child suffering, being unable to help and being let down and misunderstood by the services that should be helping.

Merryn was bed-bound by M.E. for the last three years of her life.

I don’t want to be negative, there are some good things happening – the investigative work of David Tuller, the reanalysis of the PACE trial data, the research of Ron Davis and other giants in the research field mostly in the USA (sorry I can’t name you all individually but you are all heroes).

We have the work of the UK M.E Biobank and Carol Monaghan who is fighting for us in Parliament.

But I need to take a moment to focus on the PACE trial, a study that has now had its data reanalysed and debunked as the data was fatally flawed.

I won’t go into all the details as this has already been done much better than I ever could, but unfortunately it has dominated UK research and treatments for years.

NICE is currently reviewing its guideline on M.E but the new guideline will not be published until 2020 and despite pressure from M.E charities and patients, NICE refuse to put a warning on the current version with regard to graded exercise therapy (GET).

“Doctor’s will follow the NICE guideline thinking GET is the preferred treatment option and safe. It is not, this is now fact.”

“How can it ever have seemed a good scientific idea to prescribe exercise to people with a disease where symptoms worsen after minimal exertion? It is like prescribing sugar to diabetics.”

Clare Norton.

I see a compelling similarity between the study linking autism and the MMR vaccine and the PACE trial. Both have been found to be flawed on reanalysis, both were published and supported by The Lancet, both have had a devastating effect on health.

It took The Lancet 12 years to retract the autism/vaccine study. It still has not retracted the PACE study despite being sent an open letter of the reanalysis and current biomedical research signed by 100+ researches, doctors and experts in the field.

There is now more than enough biomedical evidence out there proving M.E. is not hysteria or deconditioning. To argue otherwise is similar to climate change deniers.

My daughter did not die of “hysteria” or “deconditioning”. She died because of multi-systemic neuroimmune M.E.

Change needs to happen now to prevent the continued suffering and further deaths of the Millions Missing from society because of M.E.

“It is time for egos to be put aside, for the science to be listened to, for patients to be listened to and the Hippocratic Oath to be remembered – first, do no harm.”

Clare Norton.

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