In live debate, MP calls treatment of ME patients “one of the biggest medical scandals of the 21st century” Brooke Follow Feb 21, 2018 · 4 min read

“Dear NHS, Can you see us now?” Millions Missing protest banner, Birmingham, UK at St Philip’s Cathedral

Live debate this morning in parliament about medical abuse and the harm the PACE trial caused to patients suffering from the neuroimmune disease ME, short for Myalgic Encephalomyelitis. This was hardly a debate, it was explicitly describing the stark reality faced by these patients and dragging the medical professionals responsible for this through the mud. All the MPs who spoke were on the same page. MP Carol Monaghan was on fire.

These were the highlights:

“The doctor doesn’t see me crawl on the floor. The doctor doesn’t know I don’t shower every day or brush my teeth twice a day like everyone else. He isn’t aware of my poor balance or my difficulties with reading and he certainly wasn’t here to nurse me when I once was too sick to eat. These are the words of a junior NHS doctor currently living with ME. The word fatigue does not come close to the living hell of these sufferers that is exacerbated by the inability to seek help.”

“Most sufferers are housebound and easy for society to ignore. As a result, there is a woeful lack of quality research.”

ME is eventually fatal. Patients die 20–30 years earlier from cancer and heart failure than people in the general population.

“From the start, this trial was flawed in that it ignored the WHO classification and assumed ME was psychological. Unbelievably for a trial this large, none of the groups were given specific medical interventions. The results were published in the Lancet and reported that 30% of patients were brought back to normal while 60% of patients improved. The media reported that all ME sufferers had to do to get better was exercise. However, immediately these results were questioned. How is it possible that exercise, the very thing that makes symptoms worse, could be shown to make patients better?”

A patient was told by a Leeds GP to, “just get on with my life.”

One study participant said, “I was determined to be a part of this trial because I wanted to get better. I was assigned graded exercise therapy. It never occurred to me that the treatment would actually make me more ill nor did it occur to me that my decline would not be documented and that despite patients not recovering or worsening that they would publish that the treatment was successful.” The recovery bounds were lowered so much that patients who had deteriorated during the study were marked as recovered.

ME patients have among the lowest quality of life scores of any major disease. The can live decades at the level of health of AIDS patients two months before they die. Despite affecting twice as many people as MS, ME receives disproportionately low funding as measured by number of patients effected and disease severity.

“In Wales and Scotland, there aren’t any ME centers. In the UK there are centers where they are prescribing exercise therapy that is making patients worse.”

“Would we not recognize the case for NICE to suspend the guidelines that are in place now as these are causing harm to patients?”

“In some ways, the impact of disbelief has caused harm, but the effects of the PACE trial are more far-reaching. PIP assessments that claim this disease is psychological have limited patients ability to access support. Patients are denied benefits they are entitled to and forced to rely only on their families.”

“Children with the disease have been subjected to family court proceedings.”

“This coverup in the way the PACE trial was carried out… this is one of the biggest medical scandals of the 21st century.”

“It can take a really long time for this to be diagnosed. Patients aren’t being taken seriously and they are being dismissed. It is really important that professionals are able to identify these symptoms.”

patients too ill to protest mailed in shoes describing what they missed from their former lives

I was surprised at how well this went. I was expecting the worst when I heard there would be a “debate” because to be honest, there is not much to debate. Thankfully all the MPs who spoke called out these crimes for what they are; they did not mince words. This is progress. If things keep moving in this direction we will accomplish more in the next 3 years than we have in the last 50.

Watch the Parliament debate here: PACE trial and its effects on people with ME

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