On Wednesday and Thursday of this week, BACME (British Association for CFS/ME) held their annual conference in Liverpool.
“BACME is a multidisciplinary organisation for UK professionals who are involved in the evidence-based management of patients with CFS/ME.”
“BACME exists to promote and support the delivery of evidence-based treatment for children, young people, and adults with CFS/ME in the UK.”
Members of the South Sefton ME/CFS Support Group and Chester MESH were able to hand out leaflets and copies of the ME Association guide to clinical issues to attendees.
Joan Crawford wrote to members of Chester MESH who were unable to attend, and kindly agreed that we could share her thoughts about Day 2 of the conference with you on our website blog.
Well done to Joan, and members of Chester MESH and South Sefton ME/CFS Support Group. An excellent example of local advocacy at work.
Dear Chester MESH members,
I hope you will have seen previous posts about the BACME conference, which was taking place yesterday and today in Liverpool.
I was able to attend this conference as a healthcare professional on Day 2 with a plan to challenge some of the less helpful speakers, for example, Prof Crawley from Bristol, and Prof Fink from Denmark.
Chester MESH members leafletted the conference goers as they entered on day 1 of the conference, along with giving them fliers for the film Unrest. This went really well.
Also, the South Sefton ME group were able to arrange a stand inside the conference venue and were able to distribute ME Association Purple books along with International Guidelines. This was amazing as the majority of these were distributed over the two days with hardly any left by the time I went home today!
Thanks so much to everyone involved in all of this – a lot of effort went into it and we got a really good, positive result with a lot of professionals receiving information they otherwise would not.
Fantastic!
Overall impression
My overall impression from today was a lack of specific material relating to M.E.
We heard about Mast Cell Disease (this has been misdiagnosed as M.E.), Microbiome changes in many conditions, nonspecific fatigue following infection, joint hypermobility, and Prof Fink’s view that M.E. can be better understood as a Bodily Distress Disorder!
Overall, I think this mission creep is due to lack of understanding of the core M.E. symptoms i.e. the lack of ability to generate energy, post exertional malaise (PEM) and weakness. The focus on ‘fatigue’ really doesn’t help focus the research to the task.
The talks:
Prof Crawley (Bristol University) a paediatrician who is a fan of GET, shared the results of various randomised trials. This included such gems as the SMILE trial investigating the Lightening process.
Most of the trials she discussed, SMILE, GETSET, FITNET, etc. use subjective, patient reported outcome measures.
I asked her if there was a trend in future trials that will incorporate objective measures to ensure that the small, modest improvements seen in such trials are not due to the placebo effect.
She really didn't like that at all. She did manage to tell me that using accelerometers is not that objective and her young patients cheat…. She is a fan of more passive recording of data via, for example, Smartphones.
I kind of get what she is saying but I think the game is up as regards funding for such trials in the future – if there is nothing objective as a primary outcome measure I do hope it doesn’t get funded.
David Butcher (Chairman of the Optimum Health Clinic) stated that blood testing for mitochondrial function was gold standard. [Within the Chester MESH we have data that disputed this.]
Later, Prof Anne McArdle (Liverpool University) made it clear why blood sample testing is not reliable and can be inaccurate and misleading. Skeletal muscle samples need to be tested directly via biopsy.
Prof McArdle shared pretty much the only M.E. specific work at the conference. She reported on new work that examines skeletal muscles and cytokines. She uses subjective and objective measures, which is great.
This work is still being analysed but is indicating that the effect that M.E. has on patients is like those of older, elderly adults. She thinks that skeletal muscles are producing high levels of cytokines (e.g. IP10), which is possibly causing flu-like symptoms.
She is taking this research forward with more funding looking at flavonoids and exercise tolerance. She is also keen on subgroups.
I took the opportunity to ask her if the 2-day exercise test difficulties identified in M.E. is perhaps linked to her work. She thinks it is and she also thinks that the 2-day exercise test would show problems in elderly patients too.
Next up was Prof Per Fink (Aarhus University, Denmark). He lumps ME/CFS together with other conditions he refers to as ‘functional’ – IBS, Fibromyalgia, etc. He views these as ‘medically unexplained’ and calls this new disorder: Bodily Distress Disorder (BDD).
Scientifically this is a mess. I asked him what this new condition adds to patient’s medical care and to patient’s psychological support. He didn't understand my question. So, I asked him what this adds beyond how many professionals would understand distress in such conditions to often be part of an adjustment reaction to response to developing a debilitating condition.
His view is that BDD provided a “homogenous” sample of patients and provides a nice name for patients. My mind boggled at this!
Prof Hugh Perry (Professor of experimental neuropathology – University of Southampton), who was chairing the discussion session, made it clear that the way forward is to stratify samples of patients (i.e. subgroups). This is the view of the UK Medical Research Council (MRC) as well.
Prof Fink is a lonely voice. I forgot to ask him about the validation studies that need to be done for BDD. I have emailed him about this. This work is vital if he is to get his new disorder into the International Classification of Disease (ICD-11), which is currently under review. [In ICD-10, which is used in the NHS, ME/CFS is classified under neurology.]
A GP (Dr Nutt from the Sheffield CFS service) asked him to clarify if he sees ME/CFS as a BDD and Prof Fink thinks it is – and then contradicted himself saying they are differences as well! It is my view that everyone in the audience ‘got’ the points being made here. Clinicians can see no benefit to them or patients from a disorder without boundaries.
Prof Fink showed the outcomes from a trial. This used subjective measures only. Again, he showed the small, modest improvement that would be expected in a placebo effect. If I got this right, it seemed to show an increase in physical functioning of the SF-36 to 40.
40 is a diabolically low score and represents a very high level of debility – far worse than heart failure, COPD, end stage renal disease. How he thinks this is effective ‘treatment’ is anyone’s guess. Healthy controls score 90-100!
Dr Joshua Milner (National Institute of Health, America) talked about Mast Cell Disease/Mast Cell Activation Syndrome (MCAS), which was of interest as future work in this area may shed light on certain M.E. symptoms.
I am aware of MESH members who have diagnoses in this area. I’d be happy to run through this with individuals, so they can learn more.
This could be relevant for allergy/sensitivity related symptoms, migraine, movement and vibration triggering symptoms along with shocks (including physical and psychological) and possible treatments blocking the alpha tryptase gene.
Deb Roberts (from Liverpool’s Broadgreen CFS service) gave a brief roundup of research which was interesting as I was unaware of a few papers.
I also had a discussion with her regarding the Broadgreen service along with the need for domiciliary (home) visits for those most severely affected. This is something we can try and take forward.
Due to work commitments I am unable to make the infrequent ME group leaders meeting at Broadgreen as it is now on a Wednesday. If anyone from the group can attend future meetings, please do let me know.
I hope that brings you all up to date. And a big thank you to all the patients who made a huge difference over the 2-days of this conference getting M.E. information directly to clinicians.
A top-class effort!
Please note that the disorder construct developed by Fink et al (2007, 2010) is more usually referred to by Fink and his colleagues as “Bodily distress syndrome” (BDS).
The ICD-11 core edition is expected to be finalized on May 30 and and the initial version released in June, this year.
For ICD-11, the replacement for most of the ICD-10 Somatoform disorders and F48.0 Neurasthenia is a new, single disorder construct that ICD Revision has called “Bodily distress disorder.”
You can view the listing and textual Description here:
https://icd.who.int/dev11/f/en#/http%3a%2f%2fid.who.int%2ficd%2fentity%2f767044268
There are three severity specifiers for BDD: Mild BDD; Moderate BDD; Severe BDD.
ICD-11’s “Bodily distress disorder” is differently conceptualised to Fink’s BDS, has different criteria (based on psychobehavioural responses to symptoms, not on symptom clusters from body systems, as BDS is based) and it captures a different patient population.
The BDD disorder construct that is going forward for the ICD-11 core edition is very similar to DSM-5’s Somatic symptom disorder, which is listed under Synonyms to “Bodily distress disorder.”
Like SSD, it makes no distinction between symptoms that are considered “medically explained” or “medically unexplained” and like SSD, it can be applied to patients with general medical diseases and conditions, like cancer, heart disease, diabetes etc. This is not the case with Fink’s BDS.
Fink tried to get his BDS construct into ICD-11 core edition but he failed and he has referred to this failure in the transcript of a lecture, last year, when he was presented with the Alison Creed Award.
An abridged primary care edition of ICD-11’s mental and behavioural disorders chapter is also under development.
This will be known as “ICD-11 PHC” and will eventually replace ICD-10 PHC in those countries that use the primary care version.
It is not used here, in the UK. From April 2018, the Read Codes (CTV3) will be retired and SNOMED CT will be mandatory for use in primary care.
Proposals for the primary care ICD-11 edition are being developed by a group led by Prof Sir David Goldberg, which includes M Rosendal. This is a different work group to the group that developed the BDD disorder and criteria for the ICD-11 core version, which was the “S3DWG” work group.
There is no publicly available date yet for the completion and release of the ICD-11 primary care edition but I am not expecting it to be completed this year. It contains 27 or 28 mental health categories for use in primary care and by low resource countries.
For the primary care edition, the Goldberg group has been pushing for an adaptation of Fink’s BDS, which it proposes to call, “Bodily Stress Syndrome”.
If the Goldberg group’s recommendation was to be approved, it would mean there would be a lack of correspondence between the disorder construct for the core ICD-11 edition and the disorder construct and criteria for the primary care edition.
BSS does not exclude IBS, FM or what Prof Goldberg refers to as “effort syndrome.”
The field trials for “BSS” have already been undertaken and a paper published.
To recap:
The ICD-11 core version is planned to release an initial version this June and will be finalized at the end of May.
The core ICD-11 edition will go forward with “Bodily distress disorder” – an SSD-like construct that has different criteria and captures a different patient population to Fink’s BDS.
Fink has failed to get his BDS disorder construct into the core ICD-11.
For the primary care edition, which is not used in the UK, the Goldberg group has been recommending and field testing an adaptation of BDS, called “Bodily Stress Syndrome”.
For a number of reasons, the WHO won’t be seeking WHA endorsement of ICD-11 at the May 2018 World Health Assembly. Instead, endorsement will be sought at a later date.
There is no mandatory implementation date for transition from ICD-10 to ICD-11. Member States will evaluate the new edition and prepare for adoption at their own pace and according to their country’s requirements. Early implementers are expected to take at least 5 years to prepare for implementation. In the meantime, ICD-10 will continue to be used for records/data collection.
Once Member States begin adopting the new edition, data will be collected using both ICD-10 and ICD-11. WHO has said the last update of ICD-10 will be in 2019 (other than the correction of errors).
NHS Digital has yet to release a projected timeline for evaluation and potential transition to ICD-11. ICD-10 (and eventually, ICD-11) will be used alongside SNOMED CT.
SNOMED CT will be mandatory for use in primary care, from April 2018. Adoption of SNOMED CT across all secondary care settings is planned to be rolled out by 2020.
SNOMED CT and ICD serve different but related purposes. SNOMED CT is the vocabulary used in electronic patient records and records patient information at the time and point of care. ICD is used to report and summarise an episode of care after the event and for recording data for statistical and epidemiological analyses.
SNOMED International has an agreement with WHO to work towards linkage between SNOMED CT and ICD-11; the cross mapping between SNOMED CT content and the content proposed for ICD-11 is in preparation.
It has been confirmed by SNOMED International that the Concept: Bodily distress disorder, which was added to SNOMED CT in July 2017, was added as an exact match for ICD-11’s “Bodily distress disorder” disorder concept – not for Fink et al’s BDS, which is not included in SNOMED CT.