Appropriate ME Treatment

Emma Lewell-Buck Excerpts

Thursday 24th January 2019 Commons Chamber

[Mrs Emma Lewell-Buck (South Shields) (Lab)]

I thank all the hon. Members who secured this debate. In preparing to speak, I have become more and more angry about the injustice and pain heaped on those who suffer from ME. They live in a country where their illness is at best belittled and at worst ignored. Their illness is sneered at thanks to the development, in the medical field and in the press, of a culture of believing that it is just people being lazy or women being hysterical.

The effects of the condition can be totally debilitating. Any other illness with such life-limiting effects would not have psychological and behavioural treatments as the go-to options. This is not a psychosomatic or psychosocial issue, and a better response is needed. Graded exercise therapy must be suspended and CBT therapy should be an option, add-on or complement to other treatments, not the treatment.

There is a growing consensus about the use of pacing for managing ME. Sadly, current NICE guidelines state that there is insufficient research evidence about the benefits or harm of pacing. That is why more funding for research is vital. We need a commitment from the Minister to increase the sparse funding for ME research, which at present stands at a paltry £1 for every sufferer.

The now widely discredited PACE trial had far-reaching implications. Not only did it add to the existing myths around ME, but it led to alterations in the application of benefits and eligibility for social care.

For someone who knows how unwell they are, there must be nothing worse than being told that it is all in their head and being sneered at by the very professions and organisations that should be supporting them. The constant quest to be believed and the desperation of just wanting some answers was summed up powerfully by my constituent, Barbara Kell. She described the endless rolling of eyes by some GPs and the frustration of others who wanted to help her but knew they would be hauled up in front of the General Medical Council if they did. Barbara told me that she is living “half a life”, and that she grieves for her past. She said she is missing out on so much, including time with her grandchildren—I can testify to the House that they are gorgeous little girls. Like thousands of others, Barbara wants and deserves to live in a country where the Government properly fund research; where treatment helps and does not hinder; where support from the state does not come at the cost of dignity; and where people actually listen to her. Right now, that is not the case.

Barbara told me that every time she went for blood tests, which were of course the wrong ones, and the results came back, she was actually hoping it was something like cancer, just so that she could put a name to the intense pain that she was feeling, get the right treatment, and know whether she was going to live or die. For the sake of my constituent Barbara and the 250,000 others affected, I hope that the Minister is really listening to what is being said today and is ready to give some justice and comfort to those who have been ignored for decades.