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Just to clarify that Ron Davis was referring to the PACE trial. The translational biomedical research programme of the Invest in ME Research Centre of Excellence for ME is world-class. I say this because of the context of the interview taking place at the charity's international Biomedical Research into ME Colloquium.
We really need to wait and see what is reported. It may be fine.
From replies by Invest in ME Research:
The European ME Alliance (EMEA) was contacted by a BBC reporter wishing to have the email address of an American paediatric doctor.
As the EMEA UK member, Invest in ME Research, had had that doctor to one of its conferences then the EMEA admin passed on the request to IiMER.
Now, IiMER is never one to let go of an opportunity.
Therefore, in addition to passing on the requested email address, we also notified the reporter of the research Colloquium and the Conference occurring in London in that week – something he knew nothing about.
IiMER enquired what the programme would be concentrating on.
We were told it was concerning youngsters and parents who had been in trouble with social services with refusing “recommended” treatments such as CBT and GET and the recent occurrences of this.
We stated this was not recent – such outrages have been occurring for a long, long time.
We stated we had researchers present at the Colloquium who would be able to provide correct information about any aspect of ME and that perhaps the reporter should visit us at the Conference.
We inquired further and the subject of PACE came up.
We left the reporter in no doubt of our views on that flawed research.
As we were holding a pre-conference dinner with keynote speaker David Tuller, we suggested it might be a useful use of the reporter’s time to come to the dinner, at our expense and as our guest, in order to speak to David.
This was declined (due to the reporter’s schedule pressures, we have to emphasise).
We did invite the reporter to our conference as well.
The reporter also then asked if IiMER could provide researchers (who would concentrate on science) for an interview that afternoon at the Colloquium.
We stated that we had the best researchers in the world attending, and what was it the reporter wanted to ask?
We were asked if Dr Esther Crawley was attending the Colloquium.
We gave a forthright reply to this question – leaving the reporter in no doubt that that was not the case.
So we were asked if we could provide researchers for some background information and maybe an interview but with knowledge of the science.
We agreed.
Whilst the reporter journeyed to the Colloquium venue IiMER hastily tried to find time within the Colloquium schedule to facilitate this.
Luckily lunch was imminent at the reporter’s planned arrival time at the venue.
IiMER asked Professor Ron Davis, Dr Kristian Sommerfelt (a paediatrician from Norway who was attending the Colloquium with Norwegian colleagues from Haukeland University Hospital in Bergen) to participate in the interview. They accepted.
We also asked Dr Amolak Bansal if he could participate. Dr Bansal runs an ME clinic in the NHS, has been involved in the research funded by IiMER and provided cohorts of patients to the research teams funded by IiMER.
We felt this provided a good overall mix of experience covering not just the range of disciplines but also an international context. IiMER believe that ME is an international problem and the knowledge of these scientists/clinicians could not be doubted.
These Colloquium delegates would provide robust and honest science to any questions posed by the reporter.
We also felt it was important that the BBC reporter had a true patient/carer view of ME so they could really understand what parents were having to go through to protect their children as well as trying to get them better.
Therefore, we asked Kjersti Krisner from Norway to be involved. Kjersti was our guest speaker at the IIMEC11 pre-conference dinner and has three extremely severely affected children with ME.
The reporter arrived – accepted our offer of lunch – and proceeded to discuss briefly with IiMER’s chosen discussion partners.
Here is where one can decide whether the line of questioning from the BBC reporter is valid – whether it is designed to provoke a response which would illustrate to the reporter whether there is more research needed into this or whether there is something else that the reporter can determine from the answer.
Our initial view was that a pre-determined foundation for the planned 45 minute programme had already been laid and that these additional (unplanned) interviews were just to add some side information.
After discussing with David Tuller and Nigel Speight later – both of whom were interviewed by the reporter the next day, thanks to IiMER’s invitation to the reporter to attend - then we will happily delay judgement until the programme airs.
The reporter then performed official interviews in a quiet area organised by IiMER.
The questions were initially deemed somewhat perverse as it must be already quite apparent to any reporter who has performed adequate research
- that PACE is an example of how not to do research
- that families with children with ME are often victimised by the ignorance of NHS and social services about ME
- that research into ME has been hampered by establishment organisations that fail to fund proper research or to abide by the WHO classification as a neurological illness or of the IOM report which finds ME is a chronic disease.
IiMER created these interviews out of nothing, a tiny glimpse of an opportunity.
That the reporter did not know about the IiMER conferences, did not know we had the researchers whom we did have at the Colloquium, and had seemingly not heard of any of them – does not bode well. But we shall see.
Certainly there is no excuse to get this wrong now.
We hope our actions might have at least provided the reporter with need to rethink his planned programme.
IiMER are prepared to assist if required.
As mentioned previously the reporter did meet David Tuller and Nigel Speight later the next day when he attended the conference to perform interviews.
No other individuals were involved in this.
As we wrote we created this opportunity out of nothing, without any support and no prior knowledge of the programme, or much knowledge about the reporter or his brief.
Therefore, it is difficult to know what background research or prior programme development had been performed.
If the reporter did not know about IiMER or our research or our conference/colloquium (which seemed to be the case) then we have some concern as to what may be produced.
From the questions posed our immediate gut feeling was that he had already formed the foundation of the programme from talking to others who did not have the best interests of people with ME at heart.
But we are also prepared to state that we should await the programme being scheduled.
We only hope that the esteemed scientists presented to him would have been enough to persuade him to make his research better and more thorough in future.
What we do not need is yet another programme which totally misses the opportunity to provide an accurate appraisal as to why social services treat parents of children with ME negligently, why the MRC and its group of supporting organisations have failed people with ME with their policies toward research over the years, and what we really need to do to change this situation.
It should be quite simple now for any decent reporter to get it right.
But, of course, the real hurdle may well be the one set up by the editors in the BBC - who have seemed to us to be heavily influenced by the "wrong stuff" in the past.
4 June 2017
Authorities on what though?
