BACME Meeting 14-15 March

Discussion about the BACME conference prior to it starting is on this thread.
https://www.s4me.info/threads/bacme-national-conference-14-15th-march-2018-‘changing-times’.1767/


It seems there was a BACME meeting this week 14-15 March. It included presentations from Ann McArdle on muscle, Optimum Health, Per Fink on Bodily Distress Disorder, Esther Crawley on trials, Joshua Milner on mast cells. It might be interesting to compare notes from anyone who attended. I have had some confidential feedback but need to see if I can post it later.

 

This guy is on my list.

 

Hmmm so I’d hope the CMRC doesn’t do a joint conference with this group.

 

Deckchairs....Titanic.....?

 

Apologies to Sasha, the pasting of the text seemed to remove all the gaps before.

I am posting this with permission from a local ME group member:

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 today with a plan to challenge some of the less helpful speakers, for example, Prof Ester Crawley, and Prof Per Fink.

Chester MSH 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 MEA 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 has gone into all of this 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 to ME. We heard about Mast Cell Disease (this has been misdiagnosed as ME); Microbiome changes in many conditions; nonspecific fatigue following infection; joint hypermobility; along with Prof Fink’s view that ME can be better understood as a Bodily Distress Disorder Overall, I think this mission creep is due to lack of understanding of the core ME symptoms of 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 (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 report 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 kinda get what she is saying but I think the game is up re 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 from 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 on Prof McArdle (Liverpool University) made it clear why blood sample testing is really 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 ME 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 and is pointing to the effect in ME on patients is similar to 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 pwME is perhaps linked to her work. She thinks it does and she also thinks that the 2 day exercise test would show problems in elderly patients too.

Next up was Prof Per Fink. He lumps ME/CFS together with other conditions he refers to as ‘functional’ – IBS, Fibromyalgia, etc. He views these as ‘medically unexplained’. He calls this new disorder Bodily Distress Disorder - BDD. Scientifically this is a mess. I asked him what this new condition adds to patients medical care and to patients psychological support. He didn't understand my question. So, I asked him what does this add 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 boggles 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) too.

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 her sees ME/CFS as a BDD and Prof Fink thinks it is – and then contradicted himself saying they are different too!!).

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 is seemed to show an increase in physical functioning of the SF-36 to 40. 40 is diabolically low. That is 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 guess. Healthy controls score 90-100.

Dr Joshua Milner’s talk on Mast Cell Disease / Mat Cell Activation syndrome was of interest as future work in this area may shed light on pwME’s symptoms. I am aware of MESH members who have diagnoses in this area. I’d be happy to run through this with individuals to know more. This could be relevant for allergy/sensitivity related symptoms, migraine, movement and vibration triggering symptoms along with shocks (including physical and psychological) along with possible treatments blocking alpha tryptase.

Deb Roberts (from the Broadgreen CFS service) gave a brief round up 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 ME info directly to clinicians. Top class effort.

 

My impression from what I have heard is that this organisation probably has no very clear leadership in terms of a critical approach to clinical evidence. The meeting seemed a strange mix of conventional and fringe material. It may be that combining with CMRC would provide an opportunity to introduce a more critical approach. The only problem is that I am not clear that CMRC has the necessary critical clinical approach either! At least if they combined it might be easier to set up meaningful dialogue.

 

Its astonishing as unrest airs around the world that the highly controversial, incarcerator of Karina was chosen to speak. One can only assume that none of the bacme folks had watched unrest in an attempt to see what's really going down with patients. It's also bizarre that patient groups have to be there to actually inform attending clinicians. Talk about blind leading the blind otherwise.
Great work from this Cheshire member and good questions. The lack of ME specific stuff, also seen to a degree at CMRC is symptom of a fundamental interest in fatigue rather than what we regard as our complex group of illness. It looks like cherry picking also so nothing that contradicts the status quo was covered.
If MRC want to subgroup the vast umbrella they prefer then they need to get on with it.
Mitochondria stuff interesting, elderly connection make sense. Who's funding Anne now?
If theres anything more in depth I'd be interested

 

@Jonathan Edwards - that looks like a very interesting blob of feedback but I wonder if you could break it up into shorter paras for readability? A lot of PWME struggle with big blocks of text.

 

Thanks for reformatting, @Jonathan Edwards - very interesting. Lots of shocking ignorance in BACME. Well done to those patients trying to educate them.

Not the main thrust, but this comment surprised me:

If that were the case, surely people such as Snell, Stevens and Vanness would have mentioned it by now?

 

I don’t think so. The test is primarily used for cardiopulmonary diseases. There is very little data for any other conditions. I think there was a pilot study with data for one HIV and one MS patient, but that was it. And that’s a hole that needs filling in this field: we need good data for other conditions. Maybe McArdle would get the ball rolling? It seems like a very important comparison.

 

However whilst old age is associated with a big slowing Down , becoming weak, frail, aches painy, it's still not really ME-like is it? My Nan hobbled around but could tolerate stimulation and mental activity for hours. ME it often all goes. And muscular wise, a bit of over activity wouldn't set my grandparents off with all night leg throbbing, spasms , weakness for days or pain etc.
Still, I'd be interested in drawing some comparisons here, if It's doable I certainly used to feel very old when I was housebound in my teens, we haven't seen any 2 day testing research in uk, oddly imo.

 

But good to see it reported that "Prof Fink is a lonely voice", and hopefully making himself ever lonelier as he persists with his Bodily Distress Disorder: "His view is that BDD provided a “homogenous” sample of patients and provides a nice name for patients!" If that doesn't advertise his 'innovative' perception of science I don't know what does.

 

@Joan Crawford
many thanks for all your hard work.

 

If BACME are willing to accept non-BACME members presenting at their conference (and I assume Per Fink isn't one, not being a practitioner in Britain) then it's a conference that would seem ripe for having presentations from people such as @Jonathan Edwards and Nigel Speight and @dave30th (David Tuller) and others, to properly wake them up to what they're doing.

I'm serious about that - I hope that people who are knowledgeable about why CBT and GET are such a pile of **** will submit papers to present at BACME's conference next year.

 

I'd also like to see Mark VanNess present at BACME on why it's inadvisable for PWME to undergo graded exercise, given the underlying exercise physiology - and to explain, as a topic expert, why ME doesn't look remotely like deconditioning.

I'd also love for a patient who is/was also a researcher/scientist (there are loads) to present on what it's like to be gaslighted by the NHS by being told that all we have to do to get well is stop focusing on our symptoms and exercise more. All the downstream psychological and social consequences of that. I'd like BACME members to listen to the real effects of their therapies.

I'd like us to raise money (travel costs, conference fees, expenses) to get good people to go, if necessary. Perhaps we, as S4ME, could write and ask them to go to BACME and present.

Let's flood BACME with science!

Perhaps this is also the CMRC's intention, now that it's looking like a convert to a biomedical focus... I'd like to hear more about their purpose in joining up with the BACME conference, and whether that's still their intention.