ME: Treatment and Research

Liz McInnes Excerpts

Thursday 21st June 2018 Westminster Hall

[Carol Monaghan]

Indeed. Many people have written to me about their experience of GET, but some of the most upsetting examples are of children who were forced through a programme of GET and ended up with life-changing disabilities as a result.

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

I am grateful to the hon. Lady for mentioning my constituent, Merryn Crofts, whom I will speak about later. Merryn’s mum, Clare, said to me that Merryn was put on GET and that it made her condition worse. Everything that the hon. Lady says is backed up by the testimony that Clare gave me—I just wanted to share that with her.

[Carol Monaghan]

I thank the hon. Lady for her intervention. Merryn’s is not an isolated case, and neither are those of my constituents—I am sure that Members present have all heard constituents describe the same situation.

The PACE trial, which recommended CBT and GET, influences how health insurers and the DWP make their decisions. Insurance companies refuse to pay out unless a programme of GET has been undertaken, and many people who apply for benefits are told that they must carry out GET—or, indeed, that they appear well enough to work. PACE is unique in UK medical history, in that it was part-funded by the DWP. The links of some of its main authors to health insurance companies are troubling. One of those authors, Professor Michael Sharpe, states in his briefing for the debate:

“Several of the investigators had done small amounts of independent consultancy for insurance companies, but this was not relevant to the trial. The insurance companies played no part in the trial.”

I will leave hon. Members to make up their own minds about that.

Healthcare professionals worldwide are starting to take note. The US Centres for Disease Control and Prevention and the Health Council of the Netherlands have both abandoned GET. If those countries acknowledge the flaws of GET, why are ME sufferers in the UK having to fight so hard for similar acknowledgement? The ME community hopes that GET will not feature in the NICE guidelines for ME treatment after they are revised.

Some argue that CBT is provided as a treatment for many illnesses, including heart disease and cancer, and that ME patients’ rejection of it is irrational. The key difference is that cancer patients receive biomedical treatment in addition to CBT, rather than having CBT to the exclusion of biomedical interventions. Biomedical treatment for ME is woefully lacking. There are reports from the US that certain antiviral drugs improve the condition, but without properly funded research to identify biomarkers for ME, we do not have the answers.

Diagnosis is currently based on a patient presenting with known symptoms. Although there is no biomarker for ME, that does not mean there is no biomedical test for it. The two-day cardiopulmonary exercise test, which can objectively document the effects of exercise, could be used as a diagnostic tool. In simple terms, people with ME perform adequately or even well on the first day but have reduced heart and lung function on the second. That relates to the point made by the hon. Member for Alyn and Deeside (Mark Tami) about the DWP and the fact that someone’s presentation may be good one day but not the next.

That protocol involves two identical tests separated by 24 hours, the collection of gas exchange data and the use of an exercise bike to measure work output accurately. That type of testing reveals a significant performance decrease on day two among people with ME, in terms of their workload and the volume of oxygen they consume before and during exercise. Results from a single test may be interpreted as deconditioning, which may lead to harmful exercise being prescribed. However, the objective measurements of the two-day test remove the issues of self-reporting bias and the question of effort—in other words, the results cannot be faked.

Those results support the strong and consistent patient evidence of the harm that can occur as a result of inappropriate exercise programmes. However, there are moves afoot to categorise ME as a psychological condition. NHS guidelines on medically unexplained symptoms class ME as such a condition. The Royal College of Psychiatrists states:

“Medically unexplained symptoms are ‘persistent bodily complaints for which adequate examination does not reveal sufficient explanatory structural or other specified pathology.’”

--- Later in debate ---

[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.