UK BACME ME/CFS Guide to Therapy 2025

I apologise for filling this thread with lots of rather long posts. I'm trying to get my understanding of the details sorted out so I can draft something to form the basis of a possible response.

Turning now to the Therapy guide this thread is about, I'm going to go through it a bit at a time and try to make comments. Responses welcome, or tell me to take this detailed look to a private document of my own rather than overfilling this thread.

First, when and how it was produced:

Aim

This guide was developed by the British Association of Clinicians in ME/CFS (BACME), an organisation that represents health professionals working with people who live with ME/CFS.

The guide aims to provide information to support clinicians in their work with people with ME/CFS. It was developed by a group of experienced professionals both in a specially convened open workshop, held in 2014, and through circulation and consultation with the wider BACME membership, AYME (Association for Young People with ME) and service-users.

It needed minor revision to bring it in line with the new NICE guideline (2021) and a further revision in 2024/25 added detail about the assessment process, specific consideration for people living with ME/CFS who are neurodiverse, a specific focus on education and employment, and additional resources were suggested using hyperlinks.
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Comments:

It was produced in 2014, so must have been based on the 2007 guideline that recommended CBT/GET as a treatment approach promising improvement or recovery. It was produced by clinicians working in the ME/CFS services at the time, so thoroughly steeped in the CBT/GET model and approach. I don't have the energy to go back and look at the version produced in 2014 and to detail the differences to now.

They judged that only minor adjustments were needed to adapt it to appear to fit the 2021 NICE guideline. In other words, the same bunch of therapists had already probably recognised that pwME with PEM can't sustain fixed incremental increases in physical activity, and that the 2007 guideline and PACE did not in fact recommend fixed increments, since they both used heart rate monitors to stop people overexerting in their exercise task. So they weren't using fixed increments anyway.

It was therefore easy for them to claim that their activity increases still in the guide are NICE compliant because they are not fixed increments.

They also get around NICE's saying not to use the deconditioning or fear avoidance model by simply creating a different model to justify their approach, ignoring the fact that it's equally unevidenced, and even if it were true it doesn't show how behavioural changes can lead to the improvements they claim. It does not, therefore, form the basis for any treatment program.

The approach is essentially the same as before, with the same series of steps and the same advice about behaviour changes, so it's not surprising they only needed to make small adjustments and are still able to produce a therapy program requiring significant input from therapists over a series of sessions, thus keeping their jobs and justfying them on the grounds that they are doing evidenced based treatment leading to improvement. Not true.

What should have happened once NICE had recognised that the old model and treatments were wrong and should not be used, is that the therapists should have recognised that there is no clinical trial evidence for any therapy program or treatment, and there is not settled science explaining ME/CFS.

And therefore what pwME need is a completely different medical model of care, support and harm reduction. It was time for them to scrap their treatment programs and to step aside and the funding to be used to train and employ specialist doctors and nurses for a completely new treatment model. It was time for the physios, OT's, psych therapists to stop trying to be the main/only clinicians to treat the illness and get back in their boxes to only be used when their specialist input is needed, such as for aids and adaptations, preventing contractures, counselling.

I can see it's hard for a group of professionals who have dedicated their service to pwME and thought their treatment programs were effective to cling on to this belief, and look for ways to adjust to the new guideline. They were enabled in this by having some reps on the guideline committee who presumably insisted on inclusion of some unevidenced sections on CBT and exercise programs. But if you read NICE carefully, it doesn't say pwME can achieve improvement by gradual exposure desensitisation, nor does it say there is a scientific model to follow, nor does it allow exercise programs or activity increase programs that push people beyond their current PEM threshold to try to increase activity capacity.
 
page 3 of the therapists guide:

A diagrammatic representation of some of the key factors that are known to interact in the development and management of ME/CFS is shown in Figure 1. A more detailed explanation of the dysregulation model which involves multi-system dysregulation is available from the BACME website.
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The diagram seems to imply that once triggered, it's largely behavioural factors (daily life) that sustain and can be altered in order to reverse the hypothesised dsyregulation and the symptoms.

There is nothing in the diagram to suggest that there is anything wrong with pwME other than dysregulation sustained by life stressors that can be reversed by sleep hygiene, diet, de-stressing, drinking more water, initially reduced and then gradually increased activity and sensory exposure.

The model makes me think of the sort of wellness advice for people suffering the strains of poor work life balance, including poor diet, too little or too much exercise, work or home stress etc. It might work well for people with burnout, it has nothing to offer to pwME. It does make me wonder what these therapists think ME/CFS is really like.
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Sussex NHS ME/CFS Service uses the term 'Building Up Your Baseline', with detailed instructions. Edit Add - there is No Reference to PEM in these NHS ME/CFS Sussex Services Pages.

The Building Up Your Baseline link is at the bottom of the page on this link.

https://www.sussexcommunity.nhs.uk/...lomyelitis-me-and-chronic-fatigue-service-cfs
Building up your Baseline (Page 1)

'A diagnosis of mild-moderate ME/CFS does not stop somebody from building up their baseline when they feel ready to do so, be this physically, cognitively, or socially.

The key is to find any activity that is meaningful to you and/or that you enjoy and would like to work on as a goal. Write down your goal and make it specific, measurable, achievable, relevant to your life/situation and with a timescale.





Building up your Baseline (Page 2)
Increasing your activity and the benefits

'The benefits of regular movement and gentle physical activity'​

Regular movement and gentle physical activity can help people with ME/CFS in many ways (not all may apply to you), for example, it can:

  • help generate energy
  • improve physical strength and stamina
  • improve symptoms, e.g., muscle pain
  • improve sleep
  • help you to feel more relaxed
  • create a sense of achievement
  • improve relationships with friends and family and enable you to do things together again
  • support weight management and confidence

Can physical activity make me worse?​

Any activity that is carried out beyond your current physical capability can increase symptoms and make you feel worse. To ensure that this doesn't happen, it is essential to start activities at a low, manageable level and then build up mindfully in your own time. When you start at a level you can comfortably manage (even on your worst days) and build up slowly at a rate that is right for your body, symptoms are controlled and kept to a minimum.


A little-known fact:​

  • a manageable stiffness and tiredness after physical exertion or activity is a positive sign that your body is adapting and strengthening
  • the body needs these mild to moderate 'stiff and/or tired' signals for muscle fibres to develop and for the body to adapt positively
  • so, if there are no physical feelings at all, there is no strengthening
  • if there is no strengthening then the body is likely to stay as it is or even lose stamina and strength, also known as deconditioning, a secondary symptom for many with ME/CFS due to being forced to become more sedentary to try to cope
  • in the context of managing ME/CFS it is important to differentiate appropriate stiffness and tiredness from a flare up of symptoms, which often feels like a ‘lactic acid’ build up lasting over a period of hours and perhaps days


For those who wish to increase physical activity or even consider ‘exercise’​

  • as per the latest NICE Guidance (2021) it is important that you only consider incorporating physical activity into your selfmanagement regime if you feel ready to and would like to
  • ‘exercise’ is a word that can seem totally inappropriate for someone with ME/CFS, and it is useful to consider physical‘ activity’ and ‘exercise’ as often being the same thing but done differently. The difference is that exercise is 'aerobic' activity, i.e., it causes an increase in heart rate and breathing rate, and hence, will improve fitness and you may well be a long way from this right now
  • building up often starts off with one or a combination of physical activities that are not necessarily aerobic; meaning, they are activities done at a pace and level that is comfortable and tolerable for your current level of ability
  • only when these activities can be achieved for 30 minutes, most days, is the intensity very carefully increased to create an aerobic effect
  • you can therefore start to build up with any activity that you can doand want to do
  • lots of people start with walking as it’s one of the most importantactivities we do. However, you might be more interested in gardening, dancing, or cycling for example
  • those who are more severely affected and struggle to walk or get out of bed might want to begin with gentle stretches and/or movements in bed

.

Building up your Baseline (Page 3)
Where to Start

Build up gently​

Once your chosen activity or combination of activities can be done regularly (this should feel OK because the level you choose should be reasonably easy), the length of time you do this activity for can be increased slightly.

The increases are very small, e.g., a five-minute walk becomes six minutes. An increase from five to ten minutes would not work, as this is an enormous 100% increase. Our bodies tend only to be happy with increases of around 10-20%.

Making this increase might seem difficult, possibly creating some feelings of stiffness or fatigue. However, after a few days of maintaining the activity at this new level, these symptoms usually feel better as the body changes and gets stronger.

Gentle stretches can help loosen off any stiffness and keep you supple, especially if you do them after a warm bath.

Keep to this level of activity until you are used to it, and it feels OK.

Once it feels OK another small increase (10-20%) in duration can be added.

When you can do an activity for a good length of time at a comfortable pace, e.g., strolling for 20 - 30 minutes, it is then helpful to start working your body a bit harder. This might mean walking slightly faster for part of the time. This process may take anywhere from weeks to months - the process is slow but steady.
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The Sussex and Kent ME/CFS Society News January 2025
measussex.org.uk

NHS Service marks 20 years - Sussex & Kent ME/CFS Society

During 2025 the Sussex & Kent ME/CFS Society that works for those affected by ME/CFS across the extended Sussex and Kent region is highlighting the twenty year anniversary of the NHS Sussex specialist ME/CFS Service that has been operational since 2005. The Haywards Heath based ME/CFS centre was...
measussex.org.uk measussex.org.uk

'NHS Service marks 20 years'​

By SMEAdmin On 16th January 2025

During 2025 the Sussex & Kent ME/CFS Society that works for those affected by ME/CFS across the extended Sussex and Kent region is highlighting the twenty year anniversary of the NHS Sussex specialist ME/CFS Service that has been operational since 2005.

The Haywards Heath based ME/CFS centre was established following months of consultation between the Sussex & Kent ME/CFS Society and the health authorities after hundreds of people affected by the debilitating illness and GPs were surveyed and clearly called for a specialist service be set up to assist with diagnosis and run management courses.

The service that has a staff of seven including a specialist physician and occupational therapists along with physiotherapists and a psychologist has dealt with over eight thousand referrals during the past 20 years and is considered to be a leading local ME/CFS centre in the UK. It is important to note that after thorough assessment over 30% of those referred turn out to have an alternative diagnosis that is consistent with other similar centres.

Colin Barton, chairman of the ME/CFS Society says: ‘We are immensely proud to have been involved in getting the NHS centre established and continue to work collaboratively with them. They have helped many people to manage their illness and a good number to significantly improve with some able to move on to lead reasonably active lives.’
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The Sussex and Kent ME/CFS Society News July 2025

'Build on the positives'​

By SMEAdmin On 23rd July 2025

https://measussex.org.uk/build-on-the-positives/


We are very fortunate in the UK to have the British Association of Clinicians in ME/CFS (BACME) that has a membership of around 200 experienced NHS clinicians who assess and manage hundreds of people affected by ME/CFS weekly helping many towards better health. These professionals work to the current NICE guidelines.

The specialist centres should be further developed and new ones established where there are none presently.

A good example of the specialist services is the Sussex-wide ME/CFS Service.

NHS Service marks 20 years

During 2025 the Sussex & Kent ME/CFS Society that works for those affected by ME/CFS across the extended Sussex and Kent region is highlighting the twenty year anniversary of the NHS Sussex specialist ME/CFS Service that has been operational since 2005.

The Haywards Heath based ME/CFS centre was established following months of consultation between the Sussex & Kent ME/CFS Society and the health authorities after hundreds of people affected by the debilitating illness and GPs were surveyed and clearly called for a specialist service be set up to assist with diagnosis and run management courses.

The service that has a staff of seven including a specialist physician and occupational therapists along with physiotherapists and a psychologist has dealt with over eight thousand (8000) referrals during the past 20 years and is considered to be a leading local ME/CFS centre in the UK. It is important to note that after thorough assessment over 30% of those referred turn out to have an alternative diagnosis that is consistent with other similar centres.

Colin Barton, chairman of the ME/CFS Society says: ‘We are immensely proud to have been involved in getting the NHS centre established and continue to work collaboratively with them. They have helped many people to manage their illness and a good number to significantly improve with some able to move on to lead reasonably active lives.’
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About no evidence for their treatments and not using the deconditioning/avoidance models:

Multiple trials have shown that gradually increasing activity, in fixed or variable increments, does not result in improvements in ME/CFS.

Saying that it will result in improvements because they have changed the reasoning for doing it, it just not logical because the intervention is still the same.
 
page 4

Purpose
This guide emphasises a person-centred collaborative approach that can be delivered in an interdisciplinary way. It specifically focuses on the foundations of the therapeutic supported self-management and rehabilitation pathway and does not cover diagnostic issues.

These foundations can be built upon by individual clinicians with profession specific skills and interventions. The guide aims to assist with the pragmatic implementation of these ideas.

We hope that experienced therapists may also find this guide to be helpful to appraise and refresh their practice and access new resources, whatever their background and training.
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A lot of self justifying buzz words.

Approach
The therapy should be built around a collaborative relationship with the person living with ME/CFS. Therefore, this should not be seen as a one size fits all model, but an ongoing, nonjudgmental conversation and dialogue.

Therapy is a collaborative process whereby both the therapist and person living with ME/CFS are sharing knowledge, agreeing realistic targets for therapy, and reflecting on experience.

It is recognised that each therapist using this guide will have an individual and professional perspective which can enhance the core approach described. Each person living with ME/CFS will also bring an individual perspective and a set of skills and strengths which are important to recognise in therapy.

It is helpful to establish if the person is presenting with a form of neurodiversity which may affect how they cope with ME/CFS, andhow they approach therapy. There are a number of forms of neurodiversity so we will not attempt to suggest how the therapeutic approach could be adapted to each type, but rather this is a reminder that the therapy must be tailored to the individual. There may be some common difficulties, for example people with ADHD are likely to find it difficult to develop recuperative rest strategies, which may need to be adapted for that individual, but there is not a “recipe” to follow for each form of neurodiversity.

There is a range of complementary resources, contributed by ME/CFS therapists, available from the BACME website.
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More buzz words builiding the picture of the expert therapist forming a 'therapeutic relationship' with the pwME, individualised, so basically giving therapists permission to make it up as they go along, so long as it's vaguely like the BACME model and they can get the pwME on side.
Overview of the therapy

As the remit of the guide is active therapy the rationale for the rehabilitation approach is included.

The World Health Organisation has defined rehabilitation as:

“A process aimed at enabling people to reach and maintain their optimal physical, sensory, intellectual, psychological and social functional levels. Rehabilitation provides people with the tools they need to attain independence and self-determination.”

The World Health Organisation considers that access to rehabilitation is a human right. The WHO “optimising” approach to rehabilitation can form part of the dialogue with the person with ME/CFS when forging a therapeutic alliance.

The guide has two parts: the first part focusses on the stages of therapy and the second part focusses on broader issues related to the delivery and adaptation of therapy, including delivery modalities, team working and the on-going supervision which is an essential component of delivering therapy from an individual and team perspective.
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A dishonest use of the WHO statement which does not say rehab is appropriate for all patients, only that it should be available when appropriate. BACME have no evidence rehab is appropriate for ME/CFS. Yet they suggest therapists use it as part of justifying their approach.
 
I'm just doing this detailed copying and commenting for the initial pages, not the whole 34 page document. I'll see how I go with the rest.

page 5

Part 1 – Phases of Therapy

This part of the guide will give a detailed view of the components of therapy. It starts with developing a shared understanding, identifying needs and priorities, and progresses though the development of strategies to support optimal self-management.

This progression through the phases is not intended to be a fixed or linear process, as it reflects the development of therapy in relation to the individual’s needs. A collaborative therapeutic relationship is the basis of this approach, and the guide offers a framework for this.

From our collective clinical experience, we feel there are four active phases or foci to ME/CFS therapy,and these are

• Engaging
• Regulating
• Optimising
• Sustaining

There is an expectation that there is a continual assessment and review process throughout each phase. There is no presumption of timescale for each phase, as everyone will differ. Some will need to consolidate strategies at each phase and may not require direct contact with a therapist during this time.

The aim of a rehabilitation plan is to achieve a better balance of rest and activity in all areas of life. Having achieved this, the therapy goal may be to remain stable whilst exploring ways of improving quality of life without building up at this stage, or to build up activity gently overtime where this is possible and desired.

The figure below has been designed as overlapping circles as to show the relationship of the phases and the potential journey through therapy for the person with ME/CFS. The overlapping circles emphasise that this is not a linear process and there is no suggested timescale for each phase.

The collaborative approach helps to identify which phase they are in and what might be the appropriate focus for therapy at that time. The person may already be within a particular phase, such as they may have regulated and wish to optimise their participation in activity, or a person may have a relapse and find it beneficial to focus again on regulating. It is useful for both therapist and patient to understand that this is a dynamic process.
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I won't bother to copy the diagram as it's just 4 overlapping circles with labelled with the 4 stages. So infant school. So insulting.

The thing that strikes me about this 4 stage therapeutic process much of the rest of the document is based on is the assumption that we either need or want a therpist to know all the details of how we manage our lives, and to interfere with their 'do-gooder' wellness advice and think they are delivering expert clinical care.

It's so unrealistic as an approach to ME/CFS that can change from hour to hour and day to day, and for which we have to be continuousy making decisions about activity, rest, sleep, meds etc depending on how our symptoms and capacity are and what is essential for us to do in the moment.

They don't know what's going on biologically and have no business prying into how we choose to manage our lives and relationships. They should provide us with information about what pwME find helpful, and about the risks pwME report from repeatedly pushing and crashing, then butt out unless we ask for help with the practicalities.

I need to stop. This crap is making me seriously pissed off. This is why I have no medical care.
 
The document is intended for use with pwME that is mild or moderate. There is no acknowledgement anywhere I can see of just how sick people are and how impossible it is to set goals, make plans, achieve and stay at baseline, regulate our sleep according to current western norms, eat a perfect diet, manage our lives without crashing, or that anyone can gauge when and how to test ourselves with deliberate increases in activity or stimuli.

PEM is barely mentioned as far as I recall. It's just 'setbacks' that we can be taught how to manage, then back to the sunny uplands of regulated stability and onwards to optimisation.

It feels like a fantasy version of an idealised person's life where they are suffering from a mild case of burnout and are so stupid they need someone to hold their hand through every aspect of their lives while they pursue thier goals for a happy life.

Goopy wellness trainers have arrived.

There is no mention of warning pwME that pushing a bit can lead to long term detrioration, and no safety net of an already established care pathway if we tip into severe or very severe ME/CFS after following their advice.
 
It's been pointed out that the Newton et al paper quoted at the start of the dysregulation model and several others referenced are based on Fukuda diagnosis. Given the emphasis on sympathetic/parasympathetic, and HPA axis in her team's work, I can't help wondering if that meant they included significant numbers of people with stress/burnout symptoms rather than ME/CFS with PEM. That would explain the direction of their work and conclusions.
 
Trish said:
The thing that strikes me about this 4 stage therapeutic process much of the rest of the document is based on is the assumption that we either need or want a therpist to know all the details of how we manage our lives, and to interfere with their 'do-gooder' wellness advice and think they are delivering expert clinical care.

It's so unrealistic as an approach to ME/CFS that can change from hour to hour and day to day, and for which we have to be continuousy making decisions about activity, rest, sleep, meds etc depending on how our symptoms and capacity are and what is essential for us to do in the moment.

They don't know what's going on biologically and have no business prying into how we choose to manage our lives and relationships. They should provide us with information about what pwME find helpful, and about the risks pwME report from repeatedly pushing and crashing, then butt out unless we ask for help with the practicalities.
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Can confirm that having «care» delivered through what’s essentially this model is horrible.
 
Trish said:
The document is intended for use with pwME that is mild or moderate.
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They appear to have no idea that mild/moderate means the normal range of personal care and daily living demands a healthy, not especially fit person can meet are already unsustainable.

Those people are already likely to be substituting more ready meals for cooking, having fewer showers, doing less cleaning, cutting out socialising, stopping their hobbies, stealing time to rest.

How do we get it through that no amount of wishful therapping will enable them to do more unless they improve naturally? And if they do, no amount of therapping is needed to tell them what to do next?
 
Trish said:
I can see it's hard for a group of professionals who have dedicated their service to pwME and thought their treatment programs were effective to cling on to this belief, and look for ways to adjust to the new guideline.
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And yet this is exactly what is expected of every professional everywhere. This is something that defines professionalism itself. I know you're not excusing it here, it's just really worth pointing out that this excuse is actually awful, one of the worst ones to use. It's an excuse for children and incompetent amateurs. Because it definitely is accepted that they fail us this way. How it's hard to abandon something that they, possibly, genuinely believe works.

But it doesn't. This is all that matters. It never has. Never even shown promise. It was always exactly as much of a dud as "maybe this homeopathic treatment can cure Parkinson's disease". No such thing has ever or will ever exist. The last few decades have made it clear that the entire approach of behavioural therapies are as much of a dead-end as very expensive water.

Professionals do not get themselves stuck in a loop of failure. It goes against the very idea of competent professional expertise. It's the most basic thing they can do: learn, adapt and grow from their mistakes. They have not failed to do that. They refuse. Which is entirely disqualifying, to the point where it would be preferable if everyone involved in psychosomatic ideology be summarily expelled from the profession. Not that it would happen, but it deserves to happen. This is how real professionals handle these things. These people remove from their profession's track record, they make it significantly worse.

Not that I expect it to happen. In fact I very much expect not a single person will even get even a symbolic slap on the wrist, because accountability is non-existent in this profession. Only compliance. Including to loops of failure.
 
Utsikt said:
About no evidence for their treatments and not using the deconditioning/avoidance models:

Multiple trials have shown that gradually increasing activity, in fixed or variable increments, does not result in improvements in ME/CFS.

Saying that it will result in improvements because they have changed the reasoning for doing it, it just not logical because the intervention is still the same.
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Even ones that feature no increments, that are strictly at participants' own pace, don't make any difference.

Which is normal. There is no world in which lifting 5 lbs 2 times per week will increase muscle strength or provide any meaningful difference in being able to do activities of daily living of comparable exertion.

Because there is no context in which such a problem exists without a pathology. No one needs to train in order to do activities of daily living. This whole ideology was built on the false assertion of extensive bed rest leading to severe deconditioning. It's as much of a requirement to the model as a confirmed COVID test is to a COVID diagnosis. It doesn't matter that they shifted the goalposts to place the blame on activities of daily living without this initial condition of excessive resting, the whole thing has completely fallen apart from Long Covid stemming mostly from mild cases.

Which was long obvious, but it's precisely because of the need for the initial deconditioning following excessive rest that it was asserted. And why so many MDs have confidently asserted, based on no evidence whatsoever, that most LC would be expected to come from severe COVID cases. All wrong.
 
If it helps I used to have a few years of guidance from one of the Yorkshire fatigue clinic OTs that this document was reproduced with permissions from. I was diagnosed by them initially and was taught about the so called dysregulation model. It was described as fact yet with the caveat that we don’t understand everything. So it was confusing for me with my healthcare background largely focused on proven disease mechanisms.

I think they realised quite soon how severe I was and that GET was not an option so most of the discussions were centred around pacing and self compassion etc to try and “calm the sympathetic nervous system”. I cannot recall if it was ever sold to me as a cure or not. The NHS clinic on the other hand was absolutely horrendous pushing the mental health it’s your fault narrative.

The Yorkshire fatigue clinic was set up as they didn’t approve of the Leeds ME/CFS clinic to my understanding.
 
rvallee said:
Which is normal. There is no world in which lifting 5 lbs 2 times per week will increase muscle strength or provide any meaningful difference in being able to do activities of daily living of comparable exertion.
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This.

I’ve had people nagging me about trying to sit upright for a few additional seconds every day.

When asking how that would produce any net positive effect for my OI considering I’m lying down almost 24 hours a day, I don’t get an answer.
 
page 6

Summary of the phases of therapy:

Engaging:

• Engage the person living with ME/CFS in a therapeutic relationship that facilitates collaborative working towards the person’s goals.

• Develop a full understanding of the patient’s history, symptoms, the impact of ME/CFS on their life, their social and physical environment and any other factors such as neurodiversity, severity of the condition or other needs.

• This holistic assessment should act as a foundation for future work and will support the validation of ME/CFS as a real condition which has an impact on function and wellbeing. The person is supported through the therapist’s expertise and knowledge base, to make changes that fit with their goals.

• Engaging is a foundational but ongoing process as individuals and their contexts change.
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More strings of buzz words. And a big claim that the therapist has expertise and a knowledge base that will be helpful. Lots of busywork and note taking no doubt filling long sessions or form filling asking lots of detailed personal and intrusive questions. The medical ones are the business of the doctor, not the therapist, and the lifestyle ones are none of their business unless we want practical help. We don't need a patronising nanny telling us how to run our lives.

Regulating:

• To reduce the variation in symptoms (boom and crash pattern) through stabilising daily routines, baselines for daily activity, including physiological cycles such as sleep, eating and moving.

• This can provide a sense of control and for some the goal may be to achieve regulation and stay at this level.

• For some people this may provide a foundation to help achieve further goals.
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This is where they get us to fill in activity diaries, sleep diaries, diet diaries, then they ignore all that and lecture us about sleep hygiene, healthy diet, boom and bust, with diagrams of course.

It's all about telling us we can and should find a baseline, and then they will be able to help us move on to improvement.

All lies. Life with ME/CFS ain't like that.

Give is a nice clear leaflet about what real pwME find helpful for managing activity, help us get practical help and answer our questions, don't try to run our lives.

Optimising

• To focus on the person’s values and goals.

• This may involve re-prioritising some activities and approaching other activities in different ways.

• Whilst some may achieve increases in frequency, intensity, quality and/or duration of activity, others may find ways of adapting to achieve their goals.

• Optimisation is always developed in partnership with the person living with ME/CFS.
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God I'm so sick of this stuff.

No we can't increase the frequency, intensity etc etc unless it happens naturally. Stop going on about goals. It hurts.
Sustaining:

• To continue a focus on the person’s goals and an improved quality of life, whilst accommodating the demands of daily life over time.
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Yeah yeah, and pigs might fly.

I think the standard of my analysis has deteriorated, as has my typing which is suffering from serious fatigability.

Enough.
 
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