Appropriate ME Treatment

David Amess Excerpts

Thursday 24th January 2019 Commons Chamber

[Sir David Amess (Southend West) (Con)]

I congratulate the hon. Member for Glasgow North West (Carol Monaghan), along with the hon. Member for Ceredigion (Ben Lake) and my right hon. Friend the Member for Loughborough (Nicky Morgan), on initiating this debate. I first heard ME being mentioned in the Chamber in the 1980s by, I think, the late Richard Holt on these Benches and Jimmy Hood on the Labour Benches. I could not pronounce the long title of the condition, but they could. As the hon. Member for Glasgow North West has said, it is disappointing that not much progress has been made, all these years later.

Like so many other Members, I am here today to speak on behalf of constituents with ME who want their voices to be heard. I am thinking of last week’s Westminster Hall debate on fibromyalgia, which is another of those problems that is not spoken about much. ME is also an invisible illness, and many people suffer in silence, so I will be using this opportunity to speak on behalf of my 500 constituents in Southend West who suffer from the illness. I would like to share with the House the words of one of them, Isabel Butler, whose moving story tells of the devastating impact of the condition, and the desperate need for the Government to take action. She says:

“I was a trainee teacher and raising my young son, having just graduated with a first class honours degree when I was struck down suddenly with this horrific illness in 2003. I battled on in pain, and despite repeated visits to my GP was simply fobbed off with antidepressants. I was not depressed, I wanted to do things but for every exertion I was overcome with pain that left me bedbound for days. Despite my best efforts and determination, I was too unwell to continue my job and pursue the career I had also dreamt of. The worst of it is, I went undiagnosed for seven long years. People don’t believe you when you tell them that you are ill, so you keep quiet, even when I had been admitted to hospital, as medics can often turn on you in contempt at the mention of ME.”

[Justine Greening (Putney) (Con)]

My hon. Friend is setting out a shocking case, and I am sure that we will hear many others like it today. The key to this has to be research, so that we can start to understand this terrible disease and then be able to build proper treatments that actually have a chance of working.

[Sir David Amess]

I am taken by the fact that we have two former Secretaries of State sitting together—my right hon. Friend the Member for Putney (Justine Greening) and my right hon. Friend the Member for Loughborough —and I certainly listen well to their advice. I absolutely agree with what my right hon. Friend says.

My constituent goes on to say:

“I do not understand why we are not being believed. I had a promising life, two beautiful boys and a career I loved. I didn’t choose to be this ill with no hope of any treatment, compassion or cure.”

The overwhelming experience of sufferers is a struggle to be believed. There is a lack of understanding among the public, policy makers and, most worrying of all, the medical profession.

[Dr Julian Lewis (New Forest East) (Con)]

My constituent Rachael King told me that one area in which there has been understanding is in schools, saying that Noadswood School and Brockenhurst College in my constituency are very understanding indeed. However, she says that her 15-year-old daughter Larissa is one of the luckier ones in that respect, because so many people are not believed, as we have heard today. If they were not depressed by the condition, they will be depressed as a consequence. However, ME is not depression; it is a serious illness in its own right.

--- Later in debate ---

[Sir David Amess]

I hope that the good practice in the schools in my right hon. Friend’s constituency will be shared throughout the country.

Sufferers are too often left in agony for years, undiagnosed and untreated. GPs are failing to recognise or even believe the severity of symptoms that can devastate patients’ lives. I urge the Government, as the hon. Member for Glasgow North West did, to work with the medical profession to ensure that all GPs have the understanding to diagnose, treat and manage ME with compassion.

However, a lack of awareness among GPs is a symptom of how little we understand the condition medically. There is no known cause, reason or cure, and there is a worrying lack of investment in biomedical research for ME in this country. Without that research, we simply will not be able to improve diagnosis or treatment for patients. I join Members across this House in calling on the Minister to consider properly funding the biomedical research that ME desperately needs.

Finally, as the National Institute for Health and Care Excellence guidelines are under review—I was on the Health Committee for 10 years and remember the arguments—we should now take this opportunity to start listening to patients. The controversy of the PACE trial arose from a failure to listen to sufferers and to believe their experiences. For the NICE guidelines to be successful and transform sufferers’ lives, we need to listen to patients. I sincerely hope that this debate will not just be mere words and that it will lead to some well overdue action. In signing off her letter, my constituent Isabel said:

“After 20 years of pain, thank you for listening.”

Now that this House has listened, I hope that we can have some action.