Daily Telegraph: ‘ME researchers ‘receive death threats from sufferers’, 29 July 2011

July 29, 2011

From the Daily Telegraph, 29 July 2011.

Many ME patients believe that research into possible psychological causes for their condition represents an attempt to downplay their symptoms.

The illness, also known as chronic fatigue syndrome, is triggered by infections in the blood which are not fully understood.

Symptoms include extreme tiredness and aching muscles. Those severely affected often spend much of the day in bed or in a wheelchair.

This morning a doctor representing sufferers said the intimidation of scientists researching the causes of ME was ”completely unacceptable” but said there was anger about the way the illness is being investigated.

Charles Shepherd, medical adviser to the ME Association, was responding to reports that a small group of protesters have resorted to underhand tactics of intimidation to ensure any study of the illness focuses on whether the condition is caused by a virus.

According to BBC Radio 4's Today programme, a number of scientists investigating ME have been targeted by protesters angry that they are looking at whether the illness has any psychological causes.

Dr Shepherd said that while he condemned the intimidation, there was frustration that all the Government funding was focused on whether the illness has a psychological cause.

He added: ”This sort of personal intimidation … is I believe completely unacceptable and it is also counterproductive because it doesn't stop the type of research going on and it puts good researchers off, there is no doubt about that.

”I think you need to put this into the context of the fact that we have about 250,000 people with this illness. A very, very tiny minority of these people are involved in this sort of behaviour.

”But what people do however have a justifiable complaint about is that there has been very little, or almost nil, Government-funded research into the biomedical aspect of this illness.

”We have a whole spectrum of people there who have an illness ranging from a physical illness at one end to a psychiatric cause of chronic fatigue at the other, and it is rather like putting everyone who has a chronic headache, from migraines to brain tumours, under a chronic headache syndrome saying that they all have the same cause and the same treatment.”

He added: ”Yes, there may be a psychological input to the illness in some people but the anger, the frustration, is the fact that all this effort, all this Government funding, has been going just to the psychological side.

”I don't want to see scientists leaving the field. I want a debate with scientists and it's the way I feel we should do it. It's the way I do it.

”Scientific debates, criticism is healthy but it should be done through the medical journals, through constructive criticism. As I said, intimidation, personal abuse, has no role to play in this whatsoever.”

4 thoughts on “Daily Telegraph: ‘ME researchers ‘receive death threats from sufferers’, 29 July 2011”

  1. This is an orchestrated campaing of hate against ME patients and their careers. They know full well they have messed up and not funded biomedical research for at least 10 years in the UK. In the process they have left HGRVs to infect more people.

    I have never heard any patient say don’t do psychosocial research. But the disease is not psychological as the research has already proven it is a physical multi system neuroimmune disease.

    Not one of these claims has even been proven with evidence. But patients could easily bring our complaints of physical and verbal attacks to the authorities if they were interested. In fact, many have tried only to be laughed at.

    Chronic fatigue is a symptom of many diseases, it is not ME and it is wrong of them to lump it in with other diseases that only have a similar symptom. Or would they now like to turn back the clock on MS and HIV/AIDS, and we can all live in the 1950s and 1980s? Bias, prejudice and ignorance appear to be are ok if you aim at the right group. When do we get some human rights?

    1. No it isn’t.

      How does a ‘very, very, tiny minority’ translate into ‘an orchestrated campaing of hate against ME patients and their careeers’?

  2. Well said, JT. as Ghandi said “First they ignore you, then they laugh at you, then they fight you, then you win.”

    I see the Lightning Process salesfolk are out in force. Also the Chrysalis Effect ladies. We so need accurate diagnostic criteria – oh, we just got it! Maybe that’s part of the motivation for this focussed attack on sick people?

    Unusually, the Telegraph has not enabled comments. I wonder why.

    1. Wouldn’t want to see the normal on mass population of ME patients making sure the truth is hear.

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