This afternoon I took part in the #MEdebate in Westminster Hall.
Myalgic Encephalomyelitis (ME) is such a misunderstood illness, as the sad case of Merryn Crofts from Norden demonstrates. I spoke with Merryn's mum Clare this week, and it's clear that much more needs to be done to tackle ME and to help those who suffer its awful symptoms.
If you or anyone you know has been affected by this illness, please let me know at firstname.lastname@example.org
You can read my full contribution and tribute to Merryn, her family and all those fighting for better recognition and treatment below, or click here to watch some of my speech.
I thank the Hon Lady from Glasgow North West for securing this very important debate.
Merryn Crofts, who has already been referred to in this debate and is one of just two people who have been given ME as a cause of death, was my constituent and lived in Norden in the Rochdale area of Heywood & Middleton. I spoke with her Mum, Clare, this week who told me that the reports about Merryn in the Newspapers didn’t really cover the whole of Merryn’s condition.
Clare wanted to be here today to hear the debate but could not travel to London because of a new baby in the family – so I hope that she is able to watch this debate back home in Rochdale and I send my best wishes to her and to the new arrival.
Merryn met all the diagnostic criteria set by NICE and by the Canadian Consensus Criteria for ME/CFS.
Merryn was totally bedbound; she physically could not get out of bed.
She suffered so badly from postural hypotension that she blacked out if placed in a sitting position.
She was hypersensitive to noise, light, touch and movement.
She suffered so badly from pain; head, muscle, neurological and stomach pain that she could not get out of bed.
Her GP said that she’d worked in a hospice for 10 years, looking after cancer patients, and that in that job she couldn’t always take away pain but that she could manage the pain.
But the GP said that in Merryn’s case, her pain was unmanageable. Although Merryn was on diamorphine and ketamine she was still in pain.
Any kind of stimulus, even just a nurse walking in to the room, was an exertion to Merryn.
Merryn was permanently on syringe drivers and receiving injections. She was permanently nauseous. The terms ME and Chronic Fatigue Syndrome are often used interchangeably but Merryn’s mum tells me that fatigue was the least of her symptoms and that in her view, the use of the term CFS should be abandoned as ME is so much more than just that.
Merryn was just 15 years old when her illness started. For the first year she was not housebound and she used to go out in a wheelchair.
But as her condition worsened she became unable to go out – she went from a young girl who loved life – her passions were drama and acting - to a housebound patient whose family had to do more and more for her – even things like chatting on her behalf on social media, simple things which she was no longer able to do on her own.
I mention social media because Merryn was helped a great deal by the online ME community; her mum tells me that Merryn always wanted positive support and was very choosey about who she communicated with – she didn’t want to speak with people who exuded negativity. But she was part of a big online ME Community which included ballet dancers and sportspeople; raising the issue of whether research should look at the lifestyles of those who contract ME – is there a susceptibility which can be exacerbated by leading an active life and pursuing strenuous sports or vocations?
Merryn’s mum is very critical of the PACE guidance given by NICE and attributes this to the worsening of Merryn’s condition.
She tells me that Merryn thought she could push through the condition and keep going, whilst her family really wanted her to slow down.
Sadly, it was only when the family contacted a private medical practitioner that Merryn was given advice to slow down and told that she needed to rest. The specific advice given was “Whatever you feel you can do, only do 50% of it.”
Merryn’s mum feels very strongly that had Merryn been given this advice when her condition started that she may not have gone on to develop severe ME and she strongly urges that the NICE guidelines be reviewed. I hope that the Minister may be able to refer to this in his/her response.
Merryn’s family are still very involved in the ME Community and run Merryn’s Legacy Facebook Page which raises money for research and includes such fundraising activities as skydiving and climbing Ben Nevis – impressive feats which are done on behalf of the ME Community as representative of the things they would like to do but are unable to because of their condition.
We do need to invest more in research into ME – the best research is being done in the States but here it is being very much funded by charities and tends to concentrate on psychiatric issues rather than physical changes such as inflammation of the brain and changes to the central nervous system and we do need much more research into this aspect.
Nancy Klimas is a major ME researcher based in Miami who has more than 30 years professional experience and has achieved international recognition for her work. She compares patients with severe ME with those in the terminal stages of HIV/Aids infection in terms of the levels of pain they suffer. And there are many comparisons which can be drawn between HIV/AIDS and ME.
When HIV was first identified it was thought to be incurable and a certain death sentence but incredible research has produced advanced treatment with retrovirals which although they do not provide a cure can be used to manage the disease and it is no longer the death sentence it was.
In comparison, ME is not seen as a death sentence but as Merryn’s case sadly shows, it can be fatal. It is also described as a kind of living death. The work done on HIV/AIDS shows how powerful good research can be and I hope that in the future, following investment in ME research, we may also see great advances made in the treatment and knowledge around ME.
We also need to invest more in training for our Doctors, especially General Practitioners who are the clinicians likely to be the first port of call for those suffering with ME – our GPs need to have the skills to be able to recognise the signs & symptoms and to signpost patients to the appropriate specialists.
I hope that the Minister may be able to refer to these points in his/her response and I am immensely grateful to Merryn’s family for sharing so much with me and allowing me to tell her story.