Russell Fleming, Content Manager, ME Association
Margaret Mar, Chairman, Sam Bromiley, Action for ME, Simon Chandler, Tony Crouch, 25% ME Group, Christine Harrison, BRAME, Sue Waddle, ME Research UK, Jonathan Davies, ME Research UK, Louise Crozier, ME Research UK, Nigel Speight, ME Association, 25% ME Group, Nina Muirhead, CMRC Medical Education Group, Suzie Henson Amphlett, TYMES Trust, Charles Shepherd, ME Association, Russell Fleming, ME Association, Laurie Jones, #MEAction, Bill and Janice Kent, ReMEmber, William Weir, Helen Winning, ME Trust, Catherine Frazier, Office of Carol Monaghan, MP.
Carol Monaghan (Vice-Chair), Debbie Burgess (Tymes Trust), and Physios4ME.
The full minutes include discussion of:
- the new Forward-ME website,
- an update on the new NICE clinical guideline for ME/CFS,
- an update on DecodeME,
- an update on the Priority Setting Partnership,
- the Department of Work and Pensions and new practices following the Covid-19 crisis,
- the statement of concern about spinal surgery and ME (now published),
- social workers and children with ME,
- the suggestion that Professor Paul Garner – who has Long-Covid – should be invited to the next meeting,
- the suggestion that Clinical Commissioning Groups (CCGs) should now be contacted to ask about provision for Long-Covid/ME/CFS.
The date of the next meeting would be late November when members will be discussing the Forward-ME response to the draft NICE guideline on ME/CFS.
2. Sean O’Neill, Chief Reporter to The Times was also welcomed.
He explained that he was going to talk about the media in general, how he thought it worked and the best way to use it.
- People tend to make the mistake of seeing the media as one monolithic organisation. The reality was that, although it had many common features, it is driven and riven by competition.
Everybody wanted their own story, seeking something new, unusual, shocking, powerful human story or preferably a scandal!
- Entry into the media was not just about transmitting a message that was important, expecting it to be picked up and responded to. It very rarely worked.
Engagement with the journalist with an interest in the subject was essential. Contacts and personal initiative and connections in order to find the right person to take on the story were necessary.
- The right timing was also important. Timing could be upset by events, such as a major disaster which would prevent other news items from being reported. He suggested that there should be a plan but there should also be a plans B and C.
Sam Bromiley asked what the best way was to maintain momentum in an unchanging landscape.
Sean felt that DecodeME was a massive breakthrough. As that story unfolded there would be a series of milestone hits which would need to be focussed on with a media strategy with targets such as the BBC, Sky, ITV as well as the Press. Tell the same story, but tell it in a different place.
Sue Waddle was concerned that the Science Media Centre appeared to pre-empt stories that were about to be published. She wanted to know how much influence the SMC had on what was published.
Sean said that he did not really know. He was not a science or medical journalist. He approached ME with a strong personal interest. He had never had any dealings with SMC. He recommended ignoring them rather than entering combat. He felt that SMC influence was diminishing. It was better to concentrate on credible media outlets, making the message as strong and as human as possible.
Charles Shepherd remarked that, as a non-health journalist, Sean had done more for ME than anyone else recently. He asked whether press releases normally sent to health reporters should also be directed to people like him.
Sean advised reaching out to interested reporters in the media. When he started to write about ME he found that that there were a lot of journalists with personal experience of ME who would not be influenced by the SMC and its narrative. These were the people who needed to be reached out to.
The right way would be to develop a narrative from the patients’ perspective.
Fabricated and induced illness (FII)
Nigel Speight thanked Sean for the help that he had given on a case. He expressed his increasing concern about the Royal College of Paediatrics and Child Health (RCPCH) the higher echelons of which appeared to be deeply embedded in the fabricated and induced illness (FII) story. Even when
paediatricians had not diagnosed ME somehow the FII machinery had been activated. He was concerned that it was getting worse. He referred to a conference on medically unexplained symptoms supported by the RCPCH. He felt there was a potential story based on some paediatricians’ predilection for suspecting every family where they were slightly perplexed of FII. This needed to be rebutted.
Sean thought that there needed to be some investigative work. He had made some preliminary enquiries and had had difficulty in obtaining reliable statistics to back up the arguments. He was interested in the study day conference. Nigel would send details. Nigel was aware on one paediatrician who had 130 families under surveillance for suspicion of FI. Sean asked whether FII applied to other conditions apart from ME. Autism and food allergies were also a problem, but ME was the most serious.
Catherine Frazier intervened to say that Carol Monaghan was to have a meeting with Professor Russell Viner, current President of the RCPCH, as one of the MPs in the APPG had a connection with him. She would need input from Nigel prior to the meeting. Carol had been writing to key people about the problems with children with ME. She would update us at the next meeting.
Willy Weir, in support of what Nigel had said, added that a real iniquity apart from FII was that some patients were still being subjected to graded exercise. He could produce a number of clear-cut stories where teenagers with ME whose illness had deteriorated progressively were admitted to hospital able to walk were forced into a programme of graded exercise who left the hospital in a wheelchair and, in some cases had to be tube fed as they were no longer able to chew and swallow their food. The case
histories were absolutely factual and could be worth publicising.
Sean explained that the difficulty was to find an angle that was newsworthy. If a story on FII was forthcoming it would provide an opportunity to air those histories.
Children and Covid-19
Suzie Henson-Amphlett thanked Sean for his articles in the Times. Debbie Burgess of the Tymes Trust always had live cases where there was social services involvement. They had produced a survey in April 2020 which had highlighted several concerns. Figures had been updated. She thought that Debbie would appreciate an opportunity to talk with Sean.
Sean explained that it was difficult for him to go to his news desk to say that he had an update on a previous story. Perhaps they should find another outlet so that other journalists could spread the message. Suzie said that there was quite a lot going on at the Trust with COVID19 and its effects on children and schooling and they would be happy to provide information
Janice Kent said she had a psychotherapist friend who had three sick children who had been misdiagnosed. She was sure that she would be happy to publicise their story. Sean had noted it and would go back to Janice if he needed to.
Local News and Radio
Laurie Jones asked about disseminating stories through local news outlets. She asked whether Sean had a strategy for using local press to build a story that might be taken up by the national press. Sean repeated that it was about making connections with journalists. Unfortunately, local newspapers were dying.
Local support groups and local networks should find local journalists who would be eager to take on new stories. He recommended an organisation called Bureau Local. It had done a great deal on homelessness, working with local journalists to coordinate and tell stories of people living rough all
over the country. It could do something similar for projecting ME stories. They could bring together local journalists under a national umbrella.
Christine Harrison thanked Sean for putting his head above the parapet. She had done a lot of work with local press and radio. She agreed with Sean that the local press was not as effective as it had been, but local radio was always helpful.
He agreed that local radio was particularly strong. They had time and it was possible to tell stories. He suggested that the connection between ME and long-COVID should be emphasised. More and more people were aware of the effects of isolation in their homes. The ME experience would chime a lot more with people than it did before the pandemic.
Correcting the erroneous
Simon Chandler thought about objectives – to raise awareness and to prevent wrong treatments being given to people. He gave an example of a professor of medicine who had COVID19 being diagnosed by a proponent of the psychosocial model of ME as having anxiety without being examined in person and with no evidence.
How could a clinician diagnose without seeing patients? There was a YouTube video showing this. Sean asked for the link to the video. It was called Spotlight on Covid. As Sean was unable to deal immediately, he would get someone else to deal with it.
Emphasise the positives
Sean described the huge impact that the pieces on DecodeME had online. There was a lot of incredibly positive feedback.
Emphasis should be on the positive steps around DecodeME and, he hoped, on the new NICE Guideline, as well as the international progress that was being made.
This was better than expending energy in engaging with the psychiatric lobby which was becoming redundant.
Nina Muirhead told the Group that doctors had lots of sayings, one of which was: “If you hear the sound of hooves think horses, not Zebras. ME is the horse and weird psychological explanations are zebras. She suggested that doctors were not being trained to recognise the sound of hooves.
Margaret Mar thanked Sean for giving up his time to meet us. She wished him a speedy recovery and asked that lines of communication be kept open without overburdening him. He had been more than helpful to the Group.
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