Members of a London M.E. support group have voted overwhelmingly to end an 11-year relationship with senior staff at the King's College Hospital CFS unit – after rejecting theories advanced by King's that ME/CFS is a complex of false illness beliefs and avoidance behaviour.
The motion to sever the relationship was put forward by Catherine Hale at the annual meeting of the South East London ME Support Group last month. It was supported by 39 members, with 15 members voting against.
Over the past 11 years, senior M.E. group members have met twice a year with the co-directors of the King's CFS unit, Professor Trudie Chalder and Dr Alastair Santhouse, to discuss matters of mutual interest. Regular reports of these meetings appeared in the group newsletter for all to see.
But in the Spring issue of the newsletter, Catherine Hale argued that it was high time to draw a line under this cosiness.
She wrote that 30 years of the psychologisation of M.E. had been harmful to patients, had undermined public support for sufferers and had contributed to the neglect of people with M.E. by health and social care professionals. It had also encouraged the promotion of Graded Exercise Therapy which had sometimes harmed patients.
She stressed that this was not a criticism of the service itself as some members had undoubtedly benefitted from dedicated and supportive therapists. But “I do not want the CFS unit to claim support from our group for their theories of ME/CFS through our continued engagement with them. I would not wish the existence of this relationship to give them any advantage in securing public funds for further research into CBT and GET.”
Responding in the same newsletter, Dr Santhouse argued that open lines of communication with the local group had been extremely helpful and in many cases had resulted in improvements to their service.
Dr Santhouse added: “It is with some sadness that I have been told that some members are minded to discontinue these meetings because of concern about the PACE trial. This is disappointing for two reasons. First of all because this trial, discussed in numerous other fora, does not represent the concerns of the majority of patients that we see. And secondly, where there are differences of opinion, this is an argument for more dialogue and not less.”
The results of the vote were announced in a short piece in the group's latest newsletter, which came out last month. One of the group's trustees, Patricia de Wolfe, wrote: “There was a lively but good-tempered exchange of views, after which Patricia undertook to write to Trudie Chalder and Alastair Santhouse at King's informing them of our decision to sever the link.”
Catherine Hale declined to make any further comment.
A typically evasive comment from Dr Santhouse.
He is probably factually correct when he says that the PACE trial isn’t a concern amongst the patients that he sees, but only because they haven’t yet learned about the many issues involved. By the time that they do, they will also have realised that Dr Santhouse has little to offer and is not the right person to help them.
“Catherine Hale argued that 30 years of the psychologisation of M.E. had been harmful to patients, had undermined public support for sufferers and had contributed to the neglect of people with M.E. by health and social care professionals”.
Very well said Catherine.
Well done Catherine Hale – thanks for taking action; it’s the right thing to do.
PACE’s influence has been pernicious. (data-release any time soon? …….)
I think It was right to end the relationship with those who back the PACE trial and advocate GET and CBT as frontline treatments for ME. It was a brave decision but a necessary one by the members of the support group. Well done.
Thank you, to the South East London ME Support Group for having the courage of their convictions and ending their links with the perpetrators of the psychologising of ME for the last 30 years and the disgraced PACE trial. I hope that many other groups and ME organisations will now follow suit
Thank you South East London Support Group for standing up for us all. I was surprised when my physio recently recommended these therapies to me after all the controversy concerning the PACE trial.