Discussion in 'General ME/CFS News' started by Tom Kindlon, Apr 9, 2019.
https://www.bacme.info/sites/bacme.info/files/BACME CFS ME National services survey March19.pdf
Yes, that is the elephant in the room. I'm glad they had the integrity needed to raise concern about limited opportunities for networking - the hot topic everyone with an interest in services for CFS patients will have been debating recently.
They don't spend much time considering whether they're just providing worthless quackery founded on junk-science. The way in which they avoid the key issues makes this report feel like it's from an alternative reality. They talk about problems with recruitment due to "Negative perceptions about patients with CFS/ME" but fail to make any comment on the role that their members have played in creating and promoting negative perceptions, and suggest promoting BACME membership as a possible solution. It's pretty frustrating.
In addition to CBT/GET/Activity Management patients can also be treated to:
NHS CFS services are so quacky. They try to make up for it with terms like 'holistic', and things are often described as 'complex'.
In the problems section they say: "Poor funding can also result in patients and carers doubting the usefulness and efficacy of services and can also reduce the likelihood of GP’s making referrals to services." Maybe it's not the poor funding which is leading to doubt? Maybe it's the clear junk-science like PACE, and the way so many of those providing 'specialist' services for CFS in the NHS have kept quiet about it?
In the barriers on 'How to involve patients more in service provision' there is no mention of the history of BACME members smearing patients working to raise standard in CFS research and treatment. That is a bit of an issue.
If these are the views of BACME members, it really shows how they're just floating by in their own bubble. Maybe if they let patients join their on-line discussion forum they'd benefit from 'networking' with those who do not have a personal incentive to overlook the central problems with the NHS's CFS services?
I now need a strong cup of coffee.
GET provision, scales used and diagnostic criteria ( yes Oxford is still in there) makes me feel today is a Monday morning..
Is the taxpayer funding all these non evidence based therapies e.g NLP,etc ?
The NHS funds therapists to do whatever they like and has done sonce 1948. The situation is seriously anomalous.
Not an entertaining read before breakfast. Oh dear. It's as bad as I feared. The whole thing is based on the premise that 'therapy' is appropriate and there should be more of it made available.
And as others have said, it's entirely based on 'make it up as you go along' with most 'services' providing their own mish-mash of CBT, GET, Activity management (whatever that is) and off the wall nonsense. No mention of anything objective like step or heart rate monitoring, no inkling that there is a whole other world where ME is being researched from a completely different perspective.
And no mention of challenges to evidence for their treatments. With PACE and FINE both turning out to be null trials, there is now NO evidence that any of what the therapists are doing has any positive value, and considerable evidence that they are doing harm, yet they sail on obliviously thinking they are doing good.
And the stuff on severely ill services still talks about the need for more provision of 'therapy'. Yes, there is a mention of more need for medical specialism and training, but even there it seems to be purely for diagnosis. Some services have no diagnostic service at all - it's straight from GP referral to therapists.
A very bleak picture.
The only example they could come up with was employers?
No partner, family, friends, local community,...?
This sales pitch isn't aimed at patients.
I look forward to them introducing, using and reporting properly, and accepting the results of a robust program of outcomes measurement.
Outcome measures used:
All subjective measures?
Cannot yet be defined. Rather important qualifier, with rather critical implications.
Could be seen as a step back from patients are delusional as the starting point. So credit there, if that's what it is, and not just a face-saving sop. Bit late in coming too, must be said.
Being able to go back to work is a readily available biological marker. So is a restoration of normal or nearer normal activity patterns on actimetry.
The iillness is not biologically invisible.
our most recent appointment with physio was a huge disappointment for my daughter. She considered it a complete waste of energy.
No background knowledge re symptom physiology, could see no reason for a heart monitor use, starting point was GET.
As well as unrealistic recovery expectations.
Chocolate teapot comes to mind..
I do love to see a chocolate teapot melt, only it is taking a lot longer for everyone to see.
How can they get away with not being able to diagnose and relying on the GP? This should automatically disqualify them from NICE as they do not use heart rate monitors and do not mention PEM? If only Inability to listen and engage should get them thrown out
I am wondering whether this is a situation for a well thought out letter to BACME, backed up by research evidence that demonstrates the lack of effectiveness and potential harms of their approach and suggesting ways forward including proper service evaluation that uses objective measures (return to work/school and step monitoring) and long term follow up.
This could come either from S4ME, or from a group of patients or an individual. (If we do produce a letter or article I suggest it be sent not only to BACME but to all the clinics currently running ME services and possibly even the Clinical Commissioning groups commissioning services.)
I am making headway in education by framing it as a human rights issue - perhaps this may be another aspect that is worth highlighting?
Who are the main people involved in BACME these days?
Is Esther Crawley still effectively in charge?
One thing that is obviously missing is: to what end? What does this even accomplish?
Most countries do not have this kind of service. There is no known difference in overall outcome in the UK, other of course than the thousands of dismissed complaints of serious long-term harm. Total disease burden, economic impact, prognosis and harm minimization have no measurable difference with countries that simply do nothing at all.
The report speaks of about 8K patients per year (which means 3% annual service access at the long-stable 240K patients, so likely less). The economics of those services have been discussed in various studies but IIRC are something on the order of £1-2K per patient. I have no idea if this is based on total costs, including the baseline fixed costs of managing the clinics. That's a rough minimum of £10-15M per year in service delivery alone.
What does that money buy? Harm and complete uselessness. When research is badly lacking funds, this is extremely bad opportunity cost, wasting resources for unknown, and likely harmful overall, services that deliver no measurable outcome.
There is a mention that one of the barriers in knowledge among GP is misconception about ME being a behavioral issue, which of course is the exact model on which the services and training are built. I don't know if this is supposed to be a sick joke or if everyone involved in this is basically Mr Bean in a different wig.
According to the NICE meeting minutes Theo Anbu is one and Michael Beadsworth also. Don't know who else.
In black and white that these activity management programmes incorporate CBT and GET
AFME and MEAssociation take note this shows the NHS clinics are offering PACE lite and should not be signposting people with ME to them.
so glad I refused to attend the Liverpool service . because I would end up in court if one of these idiot jobsworth started to tell me about unhelpful thought patterns .as my pain levels increase my patience with stupidity goes down very rapidly .
I think this is a good idea. I also think it should be done by both. If S4ME on the professional side and then a group on the more person impact side. We just need to keep hitting the truth and hammer it home so the true picture is in plain sight and undeniable.
Just to be clear, this was a suggestion I raised with the hope someone else would pick it up and run with it. I'm afraid I have neither the time nor the energy at the moment to work on this.
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