UK: Priority Setting Partnership: Medically Not Yet Explained Symptoms - 10 top priorities published July 2022

Andy

Andy

Senior Member (Voting rights)
Dutch researchers involved, what could possibly go wrong....
Medically Not Yet Explained Symptoms represent up to 10-30% of presentations in general medicine settings. They can include fatigue, pain, dizziness, irritable bowel syndrome, and functional neurological symptoms.

The focus of research on Medically Not Yet Explained Symptoms is often on particular subsets of symptoms, such as chronic pain, chronic fatigue, irritable bowel syndrome, or dizziness, but it lacks a comprehensive view. This has ramifications for patients who visit different clinics for their various symptoms, without sustained improvement.

The Medically Not Yet Explained Symptoms PSP was established in 2020 to support patients, carers and clinicians in the UK and in the Netherlands in the development of a research agenda with patient knowledge, experience and preferences as the frame of reference.

This Anglo-Dutch partnership will also enable exploration of international and intercultural differences that might be of interest for future development of services and the co-design of research to develop better treatment and care.
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https://www.york.ac.uk/healthsciences/research/mental-health/projects/mnyes/

The Steering Group (which looks very over-balanced in favour of 'professionals')
Patient and carer representative/s:
  • Annie Shaw
  • Scott Spain
  • Lesley Spain (carer)
  • Steph Hayle
  • Rosie Evans
Clinical representative/s:
  • Professor Christina van der Feltz-Cornelis, Honorary Consultant Psychiatry, University of York, TEWV NHS Trust
  • Dr James Sampford, Consultant Psychiatrist, TEWV NHS Trust
  • Dr Jennifer Gilligan, Specialty Doctor in Psychiarty, TEWV NHS Trust
  • Dr Steven Evans, Psychologist, York Teaching Hospital, York
  • Dr Christopher Price, Clinical Reader in Stroke Medicine, Newcastle University
  • Dr Andrew Moriarty, General Practitioner
  • Dr Arvind Kaul, Consultant Rheumatologist, St Georges Hospital and Medical School in London
  • Dr Nick Gall, Consultant Cardiologist, Kings College Hospital NHS Foundation Trust
  • Dr Phil Duffey, Neurologist, York Teaching Hospital
  • Tracey Cunningham, Physiotherapist, TEWV NHS Trust
  • Dr Philippa Bolton, Clinical Liaison Psychiatrist, TEWV NHS Trust
  • Dr Caroline Vos, Gynaecologist, Tweestedenziekenhuis, Tilburg, The Netherlands
  • Ad Vorselaars, Occupational Physician, Arbo Unie, The Netherlands
  • Dr Arjan Videler, Psychotherapist, CLGG, Tilburg, The Netherlands
Information specialists:
  • Danielle Varley, University of York
  • Dr Iman Elfeddali, and Prof Dr Wijo Kop, Tilburg University
Project coordinators:
  • Sally Brabyn, University of York, UK
  • Llinh Nguyen, Clinical Centre for Body, Mind and Health, The Netherlands
James Lind Alliance Adviser and Chair of the Steering Group:
  • Dr Jonathan Gower, UK
  • Dr Margot Metz, The Netherlands
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And their current survey, https://york.qualtrics.com/jfe/form/SV_1LdGIB0MF6Z4iCV, which doesn't say when it closes...
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Moderator note: Go to this post for the results published in July 2022
 
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What are medically not yet explained symptoms?
Sometimes people can have long-lasting physical complaints where the cause cannot be explained by medical investigations or tests. These are called medically not yet explained symptoms (MNYES) or medically unexplained symptoms.
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I like that they are calling them 'medically not yet explained' but I'm not convinced they are being sincere or they would have written where the cause has not yet been explained by medical investigations or tests.

And given the number of psychiatrists/psychologists/physiotherapists involved I don't expect any of this research will be looking to identify any medical explanations.
 
I recognise one GOOD consultant on there:

Dr Nick Gall, Consultant Cardiologist, Kings College Hospital NHS Foundation Trust

He has been excellent at getting testing and treatment for adolescents with POTS. (Probably adults too, but I only follow a parents' FB group). Some youngsters diagnosed with ME have had huge improvement in function, ie actually able to do more, on certain meds.

Disappointed they don't use the term YUMS: Yet to be Understood Medical Symptoms!
 
I've answered the survey. In reply to the question about what research I would like to see in response to Medically Not Yet Explained Symptoms:

  • Why so many medical professionals seem unable to sit with uncertainty, resorting to psychosomatic explanations to explain away conditions that they can't otherwise diagnose.
  • Quantifying the harm caused by labelling people as having psychosomatic disorders

You can put as much or as little as you want for an answer; there's just a few more demographic questions, mostly optional. I reckon it's good to give them some ideas of what we want to see.

Another one might be analysing the problems that plague MNYES (MUS) research.

You can register to later vote on the top ten priorities.
 
I filled it in. If you're a bit foggy it is probably worth having a good think before you start. I was expecting to have a bit more guidance about what sort of thing they were looking for but it's completely open ended. I didn't mention biomedical research. I can't remember exactly what I said, but it was along the lines of:

how can it be ensured that research on psychological treatments for physical symptoms uses only objective primary outcome measures that measure meaningful benefit to patients

how can medical education can be improved so doctors don't treat patients with unexplained symptoms as 'heartsink' patients and take symptoms seriously and don't fob them off with useless therapy

Research the medical care needs of patients so severely impacted that they are housebound and too sick to access the medical care they need.

Research how those care needs of severely affected patients can best be met.

Edit: I've just remembered I said something about researching how to ensure patients can get referral to a consultant physician to do a thorough diagnosis rather than being shunted off to psychological therapy.
 
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What patient organisations are involved in this? It should of course be a wide range. But if this is the first we’ve heard of it looks like they are attempting to fly under the radar. How did they recruit the patients?

the survey needs sharing by ME organisations. People with ME need to understand they are in this category’


MUS is a Trojan horse for BPS mentality to maintain influence in the NHS. If ME remains bracketed as MUS it will be difficult to change anything even if the NiCE guidelines drop GET.
I would like to know if ME Association @Russell Fleming and @Action for M.E. have even been informed of this work by the James Lind Alliance.
 
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NelliePledge said:
What patient organisations are involved in this?
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As far as I can see, none. I stumbled across it from this tweet


A Twitter search of the link to the survey, only gives the tweet above and a further tweet from the same person. A Google search of the link only returns this thread.

A Twitter search of the link to the home page for the PSP gives no results, and Google only returns the pages on the York uni website.

It is either something totally new, or they have made woeful efforts to promote it.

From, http://www.jla.nihr.ac.uk/priority-setting-partnerships/medically-not-yet-explained-symptoms/, the protocol and terms of reference were published 28th May, presumably without involvement of patient orgs.
 
Perhaps someone could write a letter to them telling them to publicise the process properly through all the patient organisations that cover all the conditions they are including.
I suspect they will say there aren't any, as they are talking about unexplained symptoms not named syndromes.
 
http://www.jla.nihr.ac.uk/documents/medically-not-yet-explained-symptoms-psp-protocol/24954

Partners
Organisations and individuals will be invited to be involved with the PSP as partners. Partners are organisations or groups who will commit to supporting the PSP, promoting the process and encouraging their represented groups or members to participate. Organisations which can reach and advocate for these groups will be invited to become involved in the PSP. Partners represent the following groups:

  • people who have had MNYES
  • carers of people who have had MNYES
  • health care professionals - with experience of working with people with MNYES
  • Appropriate organisations that bring together and/or advocate for the patient and caregiver groups will be approached
Exclusion criteria
Some organisations may be judged by the JLA or the Steering Group to have conflicts of interest. These may be perceived to potentially cause unacceptable bias as a member of the Steering Group. As this is likely to affect the ultimate findings of the PSP, those organisations will not be invited to participate. It is possible, however, that interested parties may participate in a purely observational capacity when the Steering Group considers it may be helpful.​
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Organisations can volunteer to be partners.
 
Some organisations may be judged by the JLA or the Steering Group to have conflicts of interest. These may be perceived to potentially cause unacceptable bias as a member of the Steering Group. As this is likely to affect the ultimate findings of the PSP, those organisations will not be invited to participate.
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So somebody or some organisation is keeping a tight control on who is allowed to participate. I think it should be made public which organisations are regarded as having a conflict of interest and why.
Something else to write to them about.
@dave30th.
 
From a quote in the first post in the thread :

Medically Not Yet Explained Symptoms represent up to 10-30% of presentations in general medicine settings.
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So, in 70 - 90% of visits to doctors, the doctors know exactly what the patient's symptoms are caused by and what is wrong with the patients on first presentation? That astonishes me. It sounds like completely arrogant crap to me.
 
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