NICE Clinical Knowledge Summary (CKS) on ME/CFS, July 2025

Trish

Trish

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Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)​

Diagnosis​

Management​

Background information​

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): Summary​

  • Myalgic encephalomyelitis or encephalopathy (ME) or chronic fatigue syndrome (CFS) is a complex chronic condition defined by a specific pattern of different symptoms that impact a person's quality of life and functioning.
    • There is typically a clear relationship between normal everyday activity levels causing a disproportionate escalation in fatigue, which does not improve with rest and is slow to recover.
    • The exact pathophysiology is not fully understood.
    • Symptoms typically fluctuate and can change unpredictably in nature and severity over a day, week, or longer.
  • A flare-up describes a worsening of symptoms, more than would be accounted for by normal day-to-day variation, that affects the person's ability to perform usual activities. It is typically transient and resolves after a few days.
  • A relapse describes a sustained and marked exacerbation of symptoms lasting longer than a flare-up and needing a substantial and sustained adjustment to the person's energy management.
  • Triggers may include acute infection or illness, overexertion, injury or trauma, other medical conditions, sleep disturbance, or stress. There may be no identifiable trigger.
  • Complications include reduced quality of life, social stigma, loss of trust in healthcare and social care professionals, and impact on mental health, education, and work.
  • There is no diagnostic test for ME/CFS. A diagnosis should be suspected if the person has the following symptoms for at least 6 weeks that significantly impact functioning and are not explained by another condition:
    • Debilitating fatigue that is worsened by activity, is not caused by excessive cognitive, physical, emotional, or social exertion, and is not significantly relieved by rest.
    • Post-exertional malaise after activity.
    • Unrefreshing sleep or sleep disturbance (or both).
    • Cognitive difficulties.
    • There may be additional symptoms associated with autonomic dysfunction, pain, the gastrointestinal tract, and sensory hypersensitivities, for example.
  • Investigations should be arranged to exclude alternative or coexisting conditions, including blood tests and urinalysis.
  • Adults with persistent symptoms after 3 months should be referred to an ME/CFS specialist team for confirmation of the diagnosis and development of a personalized care and support plan.
  • Review of a person with confirmed ME/CFS should be arranged at least annually in primary care, including:
    • Assessing current or new symptoms and investigating appropriately.
    • Reviewing psychological, emotional, and social wellbeing; self-management strategies; and impact on functioning.
    • Advising about sources of information and support.
    • Reviewing and revising the specialist energy management plan, physical functioning and mobility, and physical activity or exercise programme (if relevant).
    • Considering referral to a physiotherapist or occupational therapist working in an ME/CFS specialist team if needed.
    • Reviewing the person's support needs, including medicines management; education, training, or employment needs; financial and social care support.
    • Managing any associated conditions and comorbidities including mental health, nutrition and bone health advice.
    • Offering referral for cognitive behavioural therapy if the person wishes for this.
    • Ensuring early recognition, planning for, and self-management of flare-ups or relapse.
    • Providing a named contact in primary care and/or the ME/CFS specialist team to co-ordinate care and provide support.
 
ME Association article:

NICE release a new Clinical Knowledge Summary (CKS) on ME/CFS​

July 4, 2025
The National Institute for Health and Care Excellence (NICE) release a new Clinical Knowledge Summary on ME/CFS.

Clinical Knowledge Summaries provide primary care practitioners with a readily accessible and brief summary of the current evidence base on a condition along with practical advice on diagnosis and management.

The new CKS on ME/CFS (May 2025) is based on information and recommendations in 2021 NICE guideline on ME/CFS.

This CKS also provides supplementary information and guidance on some of the subjects in the basic summary.


NICE: CKS on ME/CFS

MEA Comment​

As a former committee member of the NICE guideline, I am aware that NICE has been working on a new CKS for ME/CFS for some time and am pleased to see that along with the basic summary there is detailed information and guidance on almost all of the key aspects of diagnosis and management that are relevant to primary care.

I fully appreciate that some of these recommendations, such as regular reviews in primary care, are not going to be easy to achieve. But the committee took the view that it was far better to make these recommendations than to do nothing at all.


Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association,
Member of the 2018-2021 NICE guideline on ME/CFS committee,
Member of the 2002 Chief Medical Officer's Working Group on ME/CFS
 
I think this is quite muddled and unhelpful. Some of the problems come from the guideline itself and others seem to be new problematic interpretations of it.

In the summary, there is mention of
  • typically a clear relationship between normal everyday activity levels causing a disproportionate escalation in fatigue, which does not improve with rest and is slow to recover.
  • A flare-up describes a worsening of symptoms, more than would be accounted for by normal day-to-day variation, that affects the person's ability to perform usual activities. It is typically transient and resolves after a few days.
  • A relapse describes a sustained and marked exacerbation of symptoms lasting longer than a flare-up
  • Debilitating fatigue that is worsened by activity, is not caused by excessive cognitive, physical, emotional, or social exertion, and is not significantly relieved by rest.
All before there is any mention of PEM. When PEM is mentioned, all that is said is
  • Post-exertional malaise after activity.
I think anyone who isn't already familiar with ME/CFS is going to be mightily confused. That first bullet point seems to suggest that the result of activity is an escalation only in fatigue. Is PEM that escalation in fatigue after activity, or a flare-up that happens after activity, or something completely different?


CKS said:
The exact pathophysiology is not fully understood.
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I don't think the pathophysiology is fully understood, let alone the exact pathophysiology. This makes it sound as though BACME have it right with their dysregulation, the BPS crowd have it right with their central sensitisation and deconditioning, that they are in the right ballpark, and there just needs to be a bit of finessing.

CKS said:
  • Managing any associated conditions and comorbidities including mental health, nutrition and bone health advice.
  • Offering referral for cognitive behavioural therapy if the person wishes for this.
Click to expand...
I don't know why CBT needed to make the summary. If the doctor is managing associated conditions such as mental health, then they and the patient can decide if CBT or some other sort of counselling is useful.

CKS said:
Reviewing and revising the specialist energy management plan, physical functioning and mobility, and physical activity or exercise programme (if relevant).
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This CKS has the fingerprints of BPS minimisers on it (as, unfortunately, the guideline did to a slightly lesser degree). It's ridiculous that 'physical activity or exercise programme' makes it to the summary, while there is no mention of managing activity to avoid PEM, or pacing.

I think I'd give this CKS a fail grade, based on the summary. I'm disappointed that Charles has appeared to endorse it.
 
I agree the summary is pretty awful. Looks like it was written by AI or someone with no clue about ME/CFS.
Here's the management section:

How should I manage a person with suspected ME/CFS?​

If a person has a suspected working diagnosis of ME/CFS:

  • Explain that a diagnosis of ME/CFS can only be confirmed after 3 months of persistent symptomsthat are not explained by another condition.
    • Advise the person to return for a review before 3 months if they develop new or worsening symptoms, and ensure the person knows who to contact for advice.
  • Refer adults directly to an ME/CFS specialist team to confirm the diagnosis and develop a personalized 'care and support plan'.
    • Consider seeking advice from an appropriate specialist if there is any uncertainty about interpreting signs and symptoms at 3 months or whether further investigations are needed.
    • A personalised collaborative care and support plan should be developed by the ME/CFS specialist team based on a holistic assessment. It is the basis for other assessments and plans in areas such as social care, energy management, physical activity, physical functioning and mobility, cognitive behavioural therapy (CBT), and dietary management. See the section on Primary care review for more information.
  • Whilst awaiting specialist assessment, continue with any assessments needed to exclude or identify alternative or coexisting conditions, depending on the person's presenting symptoms.
  • Advise the person and relatives/carers about sources of information and support, as soon as the diagnosis is suspected. See the section on Primary care review for more information.
  • Advise about strategies for symptom management whilst awaiting specialist confirmation of the diagnosis. See the section on Primary care review for more detailed information. Strategies may include:
    • Do not use more energy than the person perceives they have — they should manage their daily activity and not 'push through' their symptoms.
    • Rest as needed — this may involve making changes to the daily routine, including work, school, and other activities.
    • Maintain a healthy, balanced diet, with adequate fluid intake.

How should I review a person with ME/CFS in primary care?​

If a person has a confirmed diagnosis of ME/CFS following assessment by a specialist ME/CFS team, individualized care should be provided using a coordinated multidisciplinary approach. Offer a review of the person's care and support plan in primary care at least once a year, depending on the severity and complexity of symptoms, and the effectiveness of symptom management.

  • Review the person's symptoms, impact on functioning, and self-management strategies.
    • Acknowledge to the person the reality of living with ME/CFS and how symptoms could affect them.
    • Ask about current symptoms and any changes or new symptoms; any triggers; the person's psychological, emotional, and social wellbeing; and impact on daily functioning.
    • Ask about any self-management strategies used.
    • Review sources of support and any named contact in the ME/CFS specialist team to liaise with if there are new or worsening symptoms.
    • Ask about any future plans or challenges ahead.
  • Advise the person and relatives/carers (if appropriate) about sources of information and support,such as:
  • Advise the person and relatives/carers (if appropriate) that ME/CFS symptoms can be managed but there is currently no drug treatment or cure.
    • Review the person's expectations and goals, ensuring they are realistic and meaningful to the person.
    • Advise that different management strategies may be tried, reassessed, and adapted according to the person's symptom response, preferences, and any adverse effects.
    • Involve the person's relatives/carers (as appropriate) in discussions and care planning if the person wishes for this.
  • Review and revise the person's energy management planwhich may affect cognitive, physical, emotional, and social activity, as part of the specialist care and support plan.
    • Ask about the person's ability to undertake activities of daily living.
    • Ask about the duration and quality of any periods of rest, relaxation, and sleep.
      • Advise that rest periods are part of all management strategies for ME/CFS.
      • Advise to introduce rest periods into the person's daily routine, and that relaxation techniques at the beginning of each rest period may be helpful.
      • Be aware that prolonged complete rest will not make ME/CFS symptoms better, and may result in deconditioning and an escalation in fatigue.
      • Advise about sleep management including good sleep habits, balancing sleep at night with the need for rest in the day, and making changes to sleep patterns gradually. See the CKS topic on Insomnia for more information.
    • Establish an individual activity pattern within their current energy limits that minimizes their symptoms.
      • Agree a sustainable level of activity as the first step, which may mean reducing activity.
      • Plan periods of rest and activity, and incorporate the need for pre-emptive rest, so the person has rest before symptoms increase.
      • Alternate and vary between different types of activity, and break activities into small chunks.
    • Suggest self-monitoring of activity by using tools such as an activity tracker, mobile phone heart rate monitor, or diary, if the person wishes.
    • Explain an energy management plan may help people learn to use the amount of energy they have (their 'energy limit') while reducing their risk of post-exertional malaise or worsening their symptoms by exceeding their limits.
    • Advise that this is a long-term approach and it can take weeks, months, or even years to reach stabilization or to increase tolerance or activity.
  • Consider arranging referral to a physiotherapist or occupational therapist working in an ME/CFS specialist team if additional support is needed to implement and support the person's energy management plan.
  • Review the person's physical functioning and mobility and any 'physical activity or exercise programme', if they have one. Consider arranging referral to a physiotherapist or occupational therapistworking in an ME/CFS specialist team if the person:
    • Has difficulties caused by reduced physical activity or mobility.
    • Feels ready to progress their physical activity beyond their current activities of daily living.
    • Would like to incorporate a personalized physical activity or exercise programme into managing their ME/CFS. Explain this may include strategies to maintain and prevent deterioration of physical functioning and mobility, including joint mobility, muscle function and flexibility, balance, postural and positional support, and bone health.
      • Do not advise people with ME/CFS to undertake exercise that is not part of an overseen programme (such as telling them to go to the gym or exercise more), as this may worsen symptoms.
      • Do not recommend use of graded exercise therapy (fixed incremental increases in physical activity or exercise) to manage ME/CFS.
  • Review the person's support needs which may change over time,such as:
    • Mobility, falls prevention, and daily living aids and adaptations to increase or maintain independence. See the CKS topic on Falls - risk assessment for more information.
    • Symptom management, including medicines management. Do not offer any medication or supplements to cure ME/CFS. Consider starting any new medication at the lowest possible dose and increasing the dose very slowly, depending on clinical judgement, due to possible medication sensitivities in some people with ME/CFS.
    • Education, training, or employment support needs, such as liaising with education providers, employers and occupational health teams, or support services about any reasonable adjustments and support needed to maintain function or enable the person to return to training or work once symptoms are stable.
    • Support to engage in social activities and hobbies.
    • Financial support and advice, including applying for benefits.
    • How to access a social care needs assessment and/or carer's assessment, if a person needs support at home to maintain independence.
  • Manage any associated conditions or comorbidities,such as:
    • Orthostatic intolerance — advise on adequate and frequent fluid intake, including on getting up in the morning and prior to activity; positional changes, and use of compression stockings, if appropriate. Arrange referral to secondary care if symptoms are severe or worsening, or another underlying condition is suspected. See the CKS topic on Blackouts and syncope for more information.
    • Pain — investigate symptoms and offer pain management strategies as appropriate. Arrange referral to specialist pain services if needed. See the CKS topics on Chronic pain, Headache - assessment, and Neuropathic pain - drug treatment for more information.
    • Sleep disturbance — advise on sleep management strategies, and consider the possibility of an underlying sleep disorder and refer to an appropriate specialist if symptoms are not improving. See the CKS topic on Insomnia for more information.
    • Diet and nutrition — advise on adequate fluid intake and a well-balanced diet, including eating small amounts often if there are nausea symptoms due to ME/CFS. The NHS resource Eat well and the British Dietetic Association Food Fact Sheet may be helpful. Arrange referral to a dietitian with a special interest in ME/CFS if the person is losing weight and at risk of malnutrition; gaining weight; or following a restrictive diet to manage symptoms of irritable bowel syndrome or reported food intolerances, for example. See the CKS topics on Adult malnutrition, Irritable bowel syndrome, and Obesity for more information.
    • Bone health — assess risk of vitamin D deficiency and advise on management, especially if the person is house- or bedbound. See the CKS topic on Vitamin D deficiency in adults for more information.
    • Anxiety and/or depression — relaxation breathing exercises may help mood changes, and may improve sleep quality and fatigue symptoms over time. See the CKS topics on Generalized anxiety disorder, Depression, and Post-traumatic stress disorder for more information on different management options.
  • Offer referral for cognitive behavioural therapy (CBT)if the person would like to use it to support symptom management; improve wellbeing, functioning, and quality of life; and reduce distress associated with having a chronic illness.
    • Explain that CBT recognizes that thoughts, feelings, behaviours, and physiology interact with each other in order to develop self-management strategies.
  • Ensure early recognition, planning for, and self-management of flare-ups in symptoms or relapse,which may occur even if symptoms are well managed.
    • Assess and investigate any new symptoms or changes in symptoms, which may be caused by an alternative condition or comorbidity.
    • Try to identify possible triggers for a flare-up or relapse and manage accordingly.
    • Advise how to adjust physical activity during a flare-up or relapse, monitor symptoms, and aim to stabilize symptoms by reducing physical activity to within the person's current energy limits. Advise that only once symptoms stabilize and the person feels able to resume physical activity, establish a new physical activity baseline.
    • For a relapse, advise to reduce or even stop some activities and increase the frequency or duration of rest periods. Reassess energy limits in order to stabilize symptoms.
    • Arrange referral to a physiotherapist working in an ME/CFS specialist team for review and support if needed.
    • Advise that the time it takes to return to the level of physical activity they had before a flare-up varies between people.
  • Assess and investigate whether new symptoms, or a change in the severity, nature, or pattern of symptoms, are due to the person's ME/CFS or an alternative condition or comorbidity.
    • See the section on Assessment for more information about additional investigations to consider.
    • Consider seeking advice from an appropriate specialist if there is uncertainty about interpreting signs and symptoms and whether a referral is needed, or if there is a rapid deterioration in symptoms.
  • Provide a named contact in primary care and/or the ME/CFS specialist team to coordinate the person's care and support plan,help access services, and provide support during flare-ups or periods of relapse.
    • Be aware that the specialist care and support plan may need to be reviewed and adjusted to reflect the person's current symptoms and energy limit, if this is different from before any flare-up or relapse.
see next post for managing severe and very severe ME/CFS
 

How should I manage a person with severe or very severe ME/CFS?​

The symptoms experienced by people with severe or very severe ME/CFS are varied and debilitating, and these may fluctuate and change in symptom type and severity. The person's care and support plan should be flexible and reviewed regularly.

  • Be aware of the potential impact of symptoms of severe or very severe ME/CFS in people who:
    • Need a low-stimulus environment, for example, a dark, quiet room with interaction at a level of their choice (this may be little or no social interaction).
    • Are housebound or bedbound and may need support with all activities of daily living, including personal care and aids and adaptations to assist mobility and independence in activities of daily living (for example, a wheelchair).
    • Need careful physical contact when supported with activities of daily living, taking into account possible sensitivity to touch.
    • Struggle to engage in conversations and cannot communicate without support, and may need to choose a person to be their advocate and communicate for them.
    • Are unable to eat and digest food easily, may have reduced nutritional intake, are at risk of malnutrition, and may need additional support with hydration and nutrition and referral to a dietitian who has a special interest in ME/CFS. See the CKS topic on Adult malnutrition for more information.
    • Have problems accessing information, for example, because of difficulty with screens, sound and light sensitivity, headaches affecting their ability to read, or brain fog affecting their concentration.
    • Have significant sensitivities or intolerances to medication.
    • Have difficulty accessing services and articulating their needs.
  • Refer people with severe or very severe ME/CFS to:
    • A physiotherapist or occupational therapist working in an ME/CFS specialist team for support on developing an energy management plan, if not already under their care.
    • A dietitian with a special interest in ME/CFS for a dietetic assessment and monitoring if at risk of malnutrition or unintentional weight loss. See the CKS topic on Adult malnutrition for more information.
    • A cognitive behavioural therapy (CBT) practitioner if clinically indicated. Be aware that it may be necessary to adjust the process and pace of CBT to meet the person's needs, such as shorter, less frequent sessions and longer-term goals.
  • Give information, advice, and support on:
    • How to recognize and prevent possible complications of long-term immobility.
    • How to help the person follow their care and support plan in relation to physical functioning and mobility, including:
      • Bed mobility; moving from lying to sitting to standing; transferring from bed to chair; using mobility aids; walking; joint mobility; muscle stretching and strength; balance; going up and down stairs.
  • Assess at every contact people with severe or very severe ME/CFS or those with prolonged periods of immobility for:
    • Risk of vitamin D deficiency, especially those who are house- or bedbound, and manage appropriately. See the CKS topic on Vitamin D deficiency in adults for more information.
    • Any pain including location, type, and severity, and offer pain management strategies as appropriate. See the section on Primary care review for more information.
    • Areas at risk of pressure ulcers. See the CKS topic on Pressure ulcers for more information.
    • Risk of deep vein thrombosis. See the CKS topic on Deep vein thrombosis for more information.
    • Risk of contractures.
 
Well, this is why it's so bad - it's based in part on those BACME guides:
This CKS topic is largely based on the National Institute for Health and Care Excellence (NICE) guideline Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management [NICE, 2021], the British Association of Clinicians in ME/CFS (BACME) publications Primary care guide to ME/CFS [BACME, 2022a] and ME/CFS guide to symptom management [BACME, 2022b], and the European Network on ME/CFS (EUROMENE) expert consensus document Expert consensus on the diagnosis, service provision, and care of people with ME/CFS in Europe [Nacul, 2021]. The rationale for the individual recommendations is discussed in the relevant basis for recommendation sections.
Click to expand...
 
Trish said:
  • A flare-up describes a worsening of symptoms, more than would be accounted for by normal day-to-day variation, that affects the person's ability to perform usual activities. It is typically transient and resolves after a few days.
  • A relapse describes a sustained and marked exacerbation of symptoms lasting longer than a flare-up and needing a substantial and sustained adjustment to the person's energy management.
Click to expand...
I don't recognise this as ME.
 
Something else I find hard to understand is why these CKS summaries are going out under the NICE name & branding, yet are being produced by a private company with apparently no opportunities for patient or public involvement. It seems to make a mockery of the NICE guideline procedure if unevidenced recommendations can simply be placed in a "summary" version (which most clinicians will assume is faithful to the guidelines themselves). Why on earth did they not just summarise the actual guideline - why turn to BACME's material?
 
Nightsong said:
Something else I find hard to understand is why these CKS summaries are going out under the NICE name & branding, yet are being produced by a private company with apparently no opportunities for patient or public involvement. It seems to make a mockery of the NICE guideline procedure if unevidenced recommendations can simply be placed in a "summary" version (which most clinicians will assume is faithful to the guidelines themselves). Why on earth did they not just summarise the actual guideline - why turn to BACME's material?
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Their website reads like a software company. Are you sure they’ve actually produced the content, and not just the solution for hosting it?

I can’t access the CKS summary because of geo blocking
 
Utsikt said:
Their website reads like a software company. Are you sure they’ve actually produced the content, and not just the solution for hosting it?
Click to expand...
The full CKS guide is on NICE's website:

CKS topics are written and updated by an expert multidisciplinary team within Clarity Informatics Ltd with experience of primary care, supported by a network of over 6000 specialist external reviewers
Click to expand...
 
I've seen worse. I've seen a lot better, mostly when patients do most of the work. It takes real experts to build expert knowledge.

Thinking of my own experience, this could potentially have been a tiny bit helpful when I first got ill, but there is so much interpretation involved, and a medical professional who only knows about ME/CFS from official sources has almost zero chance of being able to interpret it correctly. It compares to someone incorrectly thinking that skipping meals indefinitely would lead to fussiness and a growling stomach, and not much else.

In the case of later years of illness, I can't see this making much difference. It's basically a complicated flowchart where time and chance do 99% of the work, with no meaningful support to allow for it. It's just far too little after decades of lies and propaganda, all of which dominate any of this.
 
Hutan said:
I think this is quite muddled and unhelpful. Some of the problems come from the guideline itself and others seem to be new problematic interpretations of it.

In the summary, there is mention of
  • typically a clear relationship between normal everyday activity levels causing a disproportionate escalation in fatigue, which does not improve with rest and is slow to recover.
  • A flare-up describes a worsening of symptoms, more than would be accounted for by normal day-to-day variation, that affects the person's ability to perform usual activities. It is typically transient and resolves after a few days.
  • A relapse describes a sustained and marked exacerbation of symptoms lasting longer than a flare-up
  • Debilitating fatigue that is worsened by activity, is not caused by excessive cognitive, physical, emotional, or social exertion, and is not significantly relieved by rest.
All before there is any mention of PEM. When PEM is mentioned, all that is said is
  • Post-exertional malaise after activity.
I think anyone who isn't already familiar with ME/CFS is going to be mightily confused. That first bullet point seems to suggest that the result of activity is an escalation only in fatigue. Is PEM that escalation in fatigue after activity, or a flare-up that happens after activity, or something completely different?



I don't think the pathophysiology is fully understood, let alone the exact pathophysiology. This makes it sound as though BACME have it right with their dysregulation, the BPS crowd have it right with their central sensitisation and deconditioning, that they are in the right ballpark, and there just needs to be a bit of finessing.


I don't know why CBT needed to make the summary. If the doctor is managing associated conditions such as mental health, then they and the patient can decide if CBT or some other sort of counselling is useful.


This CKS has the fingerprints of BPS minimisers on it (as, unfortunately, the guideline did to a slightly lesser degree). It's ridiculous that 'physical activity or exercise programme' makes it to the summary, while there is no mention of managing activity to avoid PEM, or pacing.

I think I'd give this CKS a fail grade, based on the summary. I'm disappointed that Charles has appeared to endorse it.
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Haven’t gone through this in detail but agree on the fact that the main message that has always needed to be the gist gotten across in a summary is:

PEM and what it actually is
Energy conservation and how medical professionals can support that

Maybe with some additional bits that relate to actual medical care like dropping the nonsense of ‘if you have cfs nothing else is wrong with you’ mislead from the old guideline enforcing it meant hypochondria. Leading to those who had things on top that could and needed to be helped left eg deficiencies that needed looking into or comorbidities.


The last thing this needed was CBT being put front and centre errant to infer mental health , and to me a deliberate mislead to keep people assuming the old guideline because‘professionals’ don’t get or care to get that CBT isn’t a ‘thing’ in itself but they have to check what the idea behind it is

I think even some of our better advocates like MEA inc Charles have either lost their way on this and /or had so much thrown at them they can’t see it by standing back or something else is influencing replies?

He needs to remember not more than a month back to the bmj commissioned monstrosity inc miller and garner suggesting Maeve would have been alive if she’d had CBT.

I’m very confused by the templated replies we are seeing on the MEA fb thread given as templates they are thought-through so should be thinking of all these angles and not getting caught out into maybe inadvertently sponsoring when they’ve been conned into thinking that’s ‘polite’ (what manipulators seem to be doing as a tactic these days - anyone not silenced and toeing the line accused of rude or threatened they will be , by them, suggested as being so if just rudeness and coercion which we should be making public not internalizing)
 
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NICE Clinical Knowledge Summary on Tiredness in Adults
That thread is probably worth a read for background.

It seems that it would be worth trying to improve the ME/CFS CKS, which may be all that some doctors ever read from NICE about ME/CFS. But, with the MEA having already endorsed it and BACME coming across as a credible source of opinion (even if in name only), it will be very difficult to get anyone in NICE to listen to some angry patients with a condition known to cause "cognitive difficulties".

AfME management probably have their hands and minds occupied with DecodeME and the next steps, and, in any case might not be too interested in taking this particular fight on. It could be worth asking Sonya though.

I wonder if the Chair and Vice Chair of the ME/CFS Guideline Committee might be interested in helping to highlight the problems to people in NICE who are able to take some action to improve the CKS?
 
Agreed.

I don't know whether this is the best thread, or the MEA one to post the MEA facebook thread. It feels a discussion/issue in itself that is almost more related to potentially other current things MEA has also been involved with or commented on being a bit .. can't think of the right words.

It is worth reading the replies/reply (templated) to comments

 
bobbler said:
Agreed.

I don't know whether this is the best thread, or the MEA one to post the MEA facebook thread. It feels a discussion/issue in itself that is almost more related to potentially other current things MEA has also been involved with or commented on being a bit .. can't think of the right words.

It is worth reading the replies/reply (templated) to comments

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Someone asked if CBT and energy management programs with physios and OTs are appropriate for the very severe.

This is the reply from CS:
Speaking as a member of the NICE guideline committee >> The committee contained a very mixed group of health professionals with varying views on both causation and management. In a situation like this compromises have to be made if you are going to achieve anything. As you will recall the decision to no longer recommend GET, and the watering down of CBT, resulted in some members being unable to support the overall guideline and they resigned. The guideline makes it clear that CBT is an option that can be offered on the basis that it is in many other long term conditions - to help people cope with a very disabling long term condition. The guideline also makes it clear that CBT cannot be used to treat ME/CFS on the basis that is is being perpetuated by abnormal illness beliefs and behaviour. Dr CS MEA
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This completely misses the point. He should be able to acknowledge that the recommendation is inappropriate even though it was deemed a necessary compromise.

I also don’t understand what people resigning have to do with this. Can we not to things properly because someone throws their toys out of the pram?
 
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