Drumroll…I’m in a mini-documentary!
The Campaign
Back in October, L.A. Cooper got in touch with me on behalf of the Change for ME campaign to interview me for a short film (just 35 minutes). The aim is not just to assist awareness of this much-misunderstood disease, but to campaign for a review of the Nice guidelines for M.E./CFS in the UK. At present, the Nice guidelines are sorely in need of updating: the only treatments they recommend for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome are Graded Exercise Therapy and Cognitive Behavioural Therapy, assuming that M.E. is a behavioural disorder or a functional somatisation disorder that can be overcome with exercise and challenging ‘false illness beliefs’. When, like me, patients do the Graded Exercise Therapy and are made permanently disabled by it, there is nowhere else for them to go. What’s even worse is that because the Nice guidelines give the impression that increasing activity, rather than resting, is the best treatment for ME, it can be difficult for ME patients to have access to disability or unemployment benefits, wheelchairs, or (as in my story) NHS counselling.
Nice guidelines are not so nice for ME patients
There have been great strides in M.E. research in the last couple of years, and some good news on the horizon with a new research facility being enabled in the US. But the Nice guidelines unfortunately lag behind the scientific advances, and a new study released last week showed that Graded Exercise Therapy was, long-term, no better for M.E. patients than doing nothing at all. The Nice guidelines have been put on the ‘static list’ which means they will not be revisited any time soon – and yet a significant proportion of patients are reporting that the Nice-advised therapies are making them worse, and in some cases, permanently disabled. If this were a drug, it would have been withdrawn years ago. (If you want to know more about the background, click here to my FAQs on exercise and M.E.)
The documentary
The film focuses on six people, of different ages, backgrounds and severity of illness, and focuses on our experiences of dealing with the ignorance and neglect of the medical profession, highlighting the need for specialist biomedical care for ME patients.
I have three favours to ask –
- Please watch the video, and share it with a journalist, a doctor, a politician – anyone who you think could campaign for a review of the Nice guidelines.
- Please sign this petition to reform the Nice guidelines, and this one for the Lancet to retract misleading claims of the efficacy of Graded Exercise Therapy – and please share with everyone you can think of.
And finally…
- Please excuse my still-wet-from-the-shower hair and un-made-up face! That day, I had to choose between hair and make-up or doing the interview – because of my M.E., I didn’t have the strength for both. It is not just the lack of make-up that makes me feel particularly vulnerable and ‘naked’ about this film: I tell stories here that I have confided to very few others.
Thank you all for your support. The link to the 35-minute film is here. I appear in it throughout.
This is incredibly moving. Thank you so much for doing it. The last week, with everything that has raged in the media, has left me bruised, drained and doubting myself. I loved that you talked about the self doubt that creeps in and how the video shows so clearly how desperate we are to be well.
Very very moving and enlightening. Thank you for making this. I will pass the message on.
Thank you so much for your encouragement. At long last I have come across something that explains how it really is. For me the illness is horrendous but what is worse is how I am treated by many Christians. Bless you richly.
Ed Beattie Northampton uk
Tanya,
It is hard to listen to such a close friend and hear the hurt in your voice. I will pray that ME would start getting the attention it deserves. I admire your willingness to be a voice for those that suffer so. Tanya Marlow the Warrior Advocate.
Broke my heart reading this i no wot u r all going through an no one’s helping you.
iv got fibromyalgia but no iv got m e too
iv also got terminal cancer.
docs are not listening i broke down the other day in docs an she said it cud be a mental disorder I’m sick of hearing this. I’m quiet a very happy person until i had a bad flare up an was at rock bottom X i told doc i was going to oz in 5 weeks to see my son I wanted sym help pain relief summit to get me through my trip. I was told people have gone to oz with worse problems than me X
I was made to feel a hypochondriac an cried my eyes out .
I think they get like that cos they r so ignorant of chronic illnesses an don’t no wot to do.
It’s about time we r given at least half of our life back .
I really I’m glad iv watched this video an will b sharing it but iv noticed people with no pain or fatigue illnesses read or share our statements videos etc. At least we can relate to each other.
right behind u all guys an girls xx
thanks for letting us share your video xxxx
I watched this a couple of days ago. It was wonderful! As a 42 year old mum of 3, I related to your stories enormously. I get the vulnerability too. (I’m working on my first blog post at the moment. It’s about the shame I feel from not being able to do what other women and mums do). Thank you so much for be brave enough to be honest with the world. I pray we can all change the world -one mind at a time. Off to have my afternoon nap….