ME: Treatment and Research

Debate between Stephen Pound and Liz McInnes

Thursday 21st June 2018 Westminster Hall

[Liz McInnes (Heywood and Middleton) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Gapes. I thank the hon. Member for Glasgow North West (Carol Monaghan) for securing this very important debate.

Merryn Crofts, who has already been referred to in this debate, is one of just two people in the UK who have had myalgic encephalomyelitis recorded as the cause of death. She was my constituent and lived in Norden in the Rochdale area of the Heywood and Middleton constituency. I spoke with her mum, Clare, this week, who told me that the reports about Merryn in the newspapers did not 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 the debate back home in Rochdale. I send my best wishes to her and to the new baby.

[Stephen Pound (Ealing North) (Lab)]

As do all of us.

[Liz McInnes]

Indeed, from all of us. Merryn met all the diagnostic criteria set by NICE, and the Canadian consensus criteria, for a diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome. 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 or even if her bed was raised slightly. 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 had worked in a hospice for 10 years, looking after cancer patients, and said that in that job she could not always take away pain, but she could manage it. In Merryn’s case, the GP said that 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. She 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 Merryn’s symptoms. In her view, the use of the term chronic fatigue syndrome should be abandoned, as myalgic encephalomyelitis is about so much more than just fatigue.

Merryn was only 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, with passions for 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 that 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 did not want to speak with people who exuded negativity, but she was part of a big online ME community, which included people such as ballet dancers and sportspeople. That raises the issue of whether research should look at the lifestyles of those who contract ME and whether there is a susceptibility that can be exacerbated by leading an active life and pursuing strenuous sports or vocations.

Merryn’s mum is critical of the PACE guidance given by NICE and attributes the worsening of Merryn’s condition to it. She tells me that Merryn thought she could push through the condition and keep going, although her family really wanted her to slow down. Sadly, it was only when the family contacted a private medical practitioner that Merryn was given the 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 that advice when her condition started, she might not have gone on to develop severe ME, and she strongly urges that the NICE guidelines should be reviewed. Merryn’s mum said,

“If the PACE trial were a drug, it would have been banned by now.”

I hope and I am sure that the Minister will refer to that in his response.

Merryn’s family are still very involved in the ME community and they run the “MErryn’s Legacy” Facebook page, which raises money for research and includes fundraising activities such as skydiving and climbing Ben Nevis: impressive feats that 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. The fundraisers do those activities on their behalf.

We need to invest more in research into ME. The best research, as has already been mentioned, is being done in the States. Here it is very much funded by charities and tends to concentrate on psychological issues rather than physical changes such as inflammation of the brain and changes to the central nervous system, and we need to do much more research into the physical aspect.

Nancy Klimas is a major ME researcher based in Miami. She has more than 30 years’ professional experience and has achieved international recognition for her work on ME. She compares patients with severe ME, like Merryn, with those in the terminal stages of HIV/AIDS infection in terms of the levels of pain that they suffer. Many comparisons 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 that 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. I hope that in future, following investment in ME research, we may also see great advances made in the treatment and knowledge of 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 the skills to recognise the signs and symptoms and to signpost patients to the appropriate specialists. I hope that the Minister might be able to refer to those points in his response. I am immensely grateful to Merryn’s family for sharing so much with me and for allowing me to tell her story.