UK: Physios for ME

Joan Crawford said:
I/we have no idea what patients actually do in CBT/GET trials as patients have not been monitored objectively: during, pre or post. Nor has anyone to my knowledge defined / operationalised deconditioning and demonstrated objectively that pwME are deconditioned pre CBT/GET for CFS and then not deconditioned post therapy. That 'should' all be easy to do if they were talking about observable concepts.

So much that could be done to demonstrate their theories and ideas are good proposition / sound - but alas so much avoided.
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Yet this is taught as if there is actual evidence for it. The relevant part of the IAPT therapist curriculum for CFS/ME states the following:

UNIT 3.3: Chronic Fatigue Syndrome (CFS) / Myalgic Encephalopathy (ME)

Aims

To be able to demonstrate knowledge of evidence-based interventions for people with Chronic Fatigue Syndrome, and practical skills in their application.

Competences to be demonstrated in this unit

Ability to draw on knowledge of the aetiology, epidemiology and presentation of CFS/ME, and of its differential diagnosis (and exclusion criteria).

Ability to draw on knowledge of factors considered to contribute to the development of CFS/ME (including physical illness/ serious infections (such as glandular fever), lifestyle, stress, perfectionism and distress).

Ability to draw on knowledge of factors considered to maintain CFS/ME (such as patterns of activity characterised by boom and bust cycles, unhelpful fear avoidance beliefs leading to avoidance of activity), attentional biases towards symptoms) and how these link to physiological mechanisms including poor sleep and deconditioning.

Ability to help client feel that their experience of CFS/ME is being listened to and respected (i.e. acknowledging that they are experiencing real, physical symptoms).

Ability to conduct a comprehensive assessment of the client’s symptoms, including their medical and prescription history, contextual information and main current difficulties, physical symptoms, patterns of activity and rest, coping mechanisms, the impact of CFS/ME on their life and specific concerns about symptoms, fears about engaging in activity, attentional focus and how significant others respond to symptoms.

Ability to introduce the CBT model, collaboratively identifying predisposing and precipitating factors and a vicious cycle of fatigue.

Ability to introduce and discuss planning activity and rest in the context of short and long term activity targets (establishing a consistent approach to activity initially before gradually increasing activity levels).

Ability to ensure that a focus on graded exercise is integrated into the intervention.

Ability to help the client monitor sleep, identify specific sleep problems that exacerbate fatigue and discuss sleep strategies such as an up time and bed restriction.

Ability to employ attentional training to address symptom focussing.

Ability to work on unhelpful thoughts related to engaging in activity more consistently and perfectionism, generate alternatives and help the client test these out with gradual behaviour change and behavioural experiments.

Ability to identify and work with potential obstacles to recovery.

Ability to use standard and idiosyncratic measures to evaluate outcomes with CBT for CFS.

Ability to help clients prepare for ending therapy and maintain improvements by identifying possible indicators of relapse and strategies for their management
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https://www.hee.nhs.uk/sites/default/files/documents/CBT LTC MUS curriculum.pdf

The 'theoretical understanding' underlying the general MUS model that IAPT therapist are expected to 'gain competence in' start at page 14 of the above document:

UNIT 3.1: Working with people with conditions currently labelled as “Medically Unexplained Symptoms” or “Persistent and distressing physical symptoms”

Aims

To be able to demonstrate knowledge of evidence-based interventions for people with conditions currently labelled as Medically Unexplained Symptoms, and practical skills in their application.

Competences to be demonstrated in this unit

Ability to draw on knowledge of the ways in which a range of specific biopsychosocial processes can work to maintain symptoms, psychological distress and disability, including bi-directional interactions in the domains of cognitive, emotional, behavioural, social and physiological factors
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I just read through the website for @PhysiosforME , still got quite a bit to get through but wanted to say how wonderful it is, it’s making me cry (happy tears) to read it! (My excuse is I’m a bit emotional at the moment!).

to go on your physios page and to see:

“pacing
We recommend Symptom Contingent pacing:
pacing within energy limits

We do not recommend Quota Contingent pacing (gradual increases in activity)

Read More >

heart rate monitoring
Use of a Heart Rate Monitor to keep within threshold and avoid triggering Post Exertional Malaise

Read More >

what about exercise?
We do not recommend Graded Exercise Therapy

Read More >
Watch >

what else can i do?
ME is a complex
multi-system disease.

Physiotherapy will not "treat" the underlying disease mechanisms.

Physiotherapy techniques can help alleviate symptoms and improve quality of life.

Goals should be around management, not treatment“

I cannot describe in words How happy I am to see this, after my past experiences with physio therapy. I’ve been reflecting today on all the professionals I’ve seen, how desperate I’ve been to get better, how they kept telling me to increase (either quickly or slowly), always quota based, the aim was *always* to set goals and improve function. And in the back of my mind that thinking is always there, and I very often end up doing it because I always have this feeling that if I just, just, pushed myself a tiny bit, I would be able to do it - I would get better. But it doesn’t work that way.

We really need a team like you, PhysiosforME! How glad I am that you are here!
 
lunarainbows said:
I just read through the website for @PhysiosforME , still got quite a bit to get through but wanted to say how wonderful it is, it’s making me cry (happy tears) to read it! (My excuse is I’m a bit emotional at the moment!).

to go on your physios page and to see:

“pacing
We recommend Symptom Contingent pacing:
pacing within energy limits

We do not recommend Quota Contingent pacing (gradual increases in activity)

Read More >

heart rate monitoring
Use of a Heart Rate Monitor to keep within threshold and avoid triggering Post Exertional Malaise

Read More >

what about exercise?
We do not recommend Graded Exercise Therapy

Read More >
Watch >

what else can i do?
ME is a complex
multi-system disease.

Physiotherapy will not "treat" the underlying disease mechanisms.

Physiotherapy techniques can help alleviate symptoms and improve quality of life.

Goals should be around management, not treatment“

I cannot describe in words How happy I am to see this, after my past experiences with physio therapy. I’ve been reflecting today on all the professionals I’ve seen, how desperate I’ve been to get better, how they kept telling me to increase (either quickly or slowly), always quota based, the aim was *always* to set goals and improve function. And in the back of my mind that thinking is always there, and I very often end up doing it because I always have this feeling that if I just, just, pushed myself a tiny bit, I would be able to do it - I would get better. But it doesn’t work that way.

We really need a team like you, PhysiosforME! How glad I am that you are here!
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Thank you so much - lovely to read
 
Andy said:
@PhysiosforME , I'm curious whether this image means that you endorse ICC over other selection/diagnostic criteria or you did not intend to imply that?
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It wasn't a deliberate intention to imply that although our preference is towards using ICC over other criteria as it seems to be one of the more robust out there - as ever, happy to learn more about any issues/problems with using it and/or any other alternatives so please do let us know any feedback.
 
It's hard to believe that we've only been running for one year, but yesterday saw the anniversary of our first ever meeting as an official group.

To celebrate our birthday we thought we'd recap on what we've achieved in the last 12 months
See our blog post as there's quite a long list! https://www.physiosforme.com/post/celebrating-our-12-month-anniversary

Thank you for all your help and support in the last year - it is very much appreciated
 
PhysiosforME said:
It wasn't a deliberate intention to imply that although our preference is towards using ICC over other criteria as it seems to be one of the more robust out there - as ever, happy to learn more about any issues/problems with using it and/or any other alternatives so please do let us know any feedback.
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Thanks for the response.

Criteria is a thorny issue for some in the patient community. Some patients support particular criteria and can get quite passionate about it - sometimes too much so, in my opinion. Some of that discussion can be seen in this thread, which is probably worth a read, MEAction: "DEMYSTIFYING THE DIAGNOSTIC CRITERIA FOR ME AND RELATED DISEASE"

As part of that thread, a survey that MEAction conducted that received 22 responses from researchers and clinicians is linked to, which concludes
The Canadian Consensus Criteria was judged best definition for research and clinical use, for both specialist and mainstream medical practitioners. Though some questions required a definitive answer, while in others, responders were able to choose multiple sets of criteria, the most popular responses were always, in order:

1. Canadian Consensus Criteria (CCC)

2. National Academies of Medicine / Institute of Medicine criteria (NAM/IOM)

3. International Consensus Criteria (ICC)
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Direct link to that, https://www.meaction.net/2019/11/21/diagnostic-criteria-researchers-and-clinicians-survey-results/
 
PhysiosforME said:
It's hard to believe that we've only been running for one year, but yesterday saw the anniversary of our first ever meeting as an official group.

To celebrate our birthday we thought we'd recap on what we've achieved in the last 12 months
See our blog post as there's quite a long list! https://www.physiosforme.com/post/celebrating-our-12-month-anniversary

Thank you for all your help and support in the last year - it is very much appreciated
Click to expand...

:party::party: Happy birthday! So much achieved in just one year. I'm always so impressed by your approach. Thanks for all you do!
 
Andy said:
Criteria is a thorny issue for some in the patient community. Some patients support particular criteria and can get quite passionate about it - sometimes too much so, in my opinion.
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And mine. Until we have good means to test those differences we are flying half-blind.

The only differences so far that seem important are how broad the definition is (e.g. Oxford v. CCC), and whether PEM is included (and even that is probably not well defined enough yet, but I think that comparisons of criteria with and without that requirement will give us valuable clues, whatever they may be).
 
We've just done another webinar for physios - this time for physios in neurology. Pretty much every time we are getting really positive feedback so fingers crossed we are slowly getting the message out there. Not sure if you have seen but a group of OTs has set up a similar group "OTs for ME" and I think there is a "nurses for ME" group as well. We also know of some doctors discussing setting up Doctors for ME! It seems people like our approach!
 
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