Kitty
Senior Member (Voting Rights)
Both right. Associate professor of cardiometabolic health at University of Exeter Medical School.
NHS England - E-learning Modules on ME/CFS
- Thread starter John Mac
- Start date
Both right. Associate professor of cardiometabolic health at University of Exeter Medical School.
Elara Grey
Established Member (Voting Rights)
With regards to the format:
Certificates for the e-learning are only issued if each and every thing that has to be clicked on or answered, has been. It's designed this way so that people (in theory) can't just open it, press play on a video and walk away without watching it, or open an article without reading it.
There's so much mandatory e-learning every year that the majority hate it. It's also very repetitive, having to repeat the same modules at certain timeframes e.g. annually or every two or three years.
It has been known for people to do as described above, without paying an ounce of attention to the content. Often leaving the e-learning video playing while muted and they're doing something else entirely. Just to get the certificate checked off.
There's only so much interest they can muster up in forcing people to click and tick boxes on e.g. which fire extinguishers do what every year and how not to burn the place down by plugging in daisy chains of extension cords. Or by overloading the sockets. Or to avoid blocking fire escapes. Or to mop up spills so people don't slip.
This kind of formatting is designed to force the learner to at least be present and actually looking at the screen, to some extent. It tracks the learner's 'progress', often matching it against timing. So that if you just click on everything within a few minutes without reading it, the certificate isn't issued.
It's not infallible either. As others say, this still makes for people hardly paying much attention and easily forgetting everything later.
So, I'm not defending the formatting just explaining why it is the way it is.
And yes, I agree with this sentiment:
But, in reality, it's far more an extensive issue than hiring the right people. It would need an entire overhaul of the entire system. To start with, sorting out endless mandatory e-learning about countless modules of little importance/substance. But mostly ensuring the system has the funding, staffing levels, resources and culture to not burn out their entire staff in bureaucracy and endless paperwork and checkbox exercises instead of patient care.
All this is also partly why there has been so little uptake on the e-learning. People have to spend around an entire working week's worth of hours on mandatory e-learning. On topics incredibly mundane that it's actually painful sitting through it. Not many want to go out looking for extra to do - especially when they've still got their jobs to do and usually have to find additional hours to do said mandatory e-learning.
And at the same time, I don't mean to dishearten everyone with the above explanation.
By NHS standards, this is actually one of the most well put-together and interesting e-learning modules available. It is a far higher standard and more 'catchy' (attention-wise) than their usual stuff. Even though, yes, it is still delivered as though it's to:
And, regardless of the NHS generally otherwise producing e-learning so painfully boring to sit through, this is still a massive achievement from a system so disinterested in ME/CFS, even with the current flaws in it.
Overall, I thought the content was generally good, though I do share the critique already raised. Much of the content is a vast improvement on what the majority of NHS workers think, even though it could be better.
If I could choose one thing to remove as utmost importance, it would definitely be the link to BACME.
Hopefully (or maybe wishful thinking), further feedback will lead to the flaws being fixed. We've got to start somewhere.
Doing this type of thing with different things to click on to progress through and multiple choice questions to answer is typical of the NHS. Almost all e-learning has similar styles, and it's to 'make sure' people actually complete the whole thing.
Certificates for the e-learning are only issued if each and every thing that has to be clicked on or answered, has been. It's designed this way so that people (in theory) can't just open it, press play on a video and walk away without watching it, or open an article without reading it.
There's so much mandatory e-learning every year that the majority hate it. It's also very repetitive, having to repeat the same modules at certain timeframes e.g. annually or every two or three years.
It has been known for people to do as described above, without paying an ounce of attention to the content. Often leaving the e-learning video playing while muted and they're doing something else entirely. Just to get the certificate checked off.
There's only so much interest they can muster up in forcing people to click and tick boxes on e.g. which fire extinguishers do what every year and how not to burn the place down by plugging in daisy chains of extension cords. Or by overloading the sockets. Or to avoid blocking fire escapes. Or to mop up spills so people don't slip.
This kind of formatting is designed to force the learner to at least be present and actually looking at the screen, to some extent. It tracks the learner's 'progress', often matching it against timing. So that if you just click on everything within a few minutes without reading it, the certificate isn't issued.
It's not infallible either. As others say, this still makes for people hardly paying much attention and easily forgetting everything later.
So, I'm not defending the formatting just explaining why it is the way it is.
And yes, I agree with this sentiment:
But, in reality, it's far more an extensive issue than hiring the right people. It would need an entire overhaul of the entire system. To start with, sorting out endless mandatory e-learning about countless modules of little importance/substance. But mostly ensuring the system has the funding, staffing levels, resources and culture to not burn out their entire staff in bureaucracy and endless paperwork and checkbox exercises instead of patient care.
All this is also partly why there has been so little uptake on the e-learning. People have to spend around an entire working week's worth of hours on mandatory e-learning. On topics incredibly mundane that it's actually painful sitting through it. Not many want to go out looking for extra to do - especially when they've still got their jobs to do and usually have to find additional hours to do said mandatory e-learning.
And at the same time, I don't mean to dishearten everyone with the above explanation.
By NHS standards, this is actually one of the most well put-together and interesting e-learning modules available. It is a far higher standard and more 'catchy' (attention-wise) than their usual stuff. Even though, yes, it is still delivered as though it's to:
And, regardless of the NHS generally otherwise producing e-learning so painfully boring to sit through, this is still a massive achievement from a system so disinterested in ME/CFS, even with the current flaws in it.
Overall, I thought the content was generally good, though I do share the critique already raised. Much of the content is a vast improvement on what the majority of NHS workers think, even though it could be better.
If I could choose one thing to remove as utmost importance, it would definitely be the link to BACME.
Hopefully (or maybe wishful thinking), further feedback will lead to the flaws being fixed. We've got to start somewhere.
Last edited:
Jonathan Edwards
Senior Member (Voting Rights)
But is it?
My impression is that data so far suggest that five people and maybe a dog have done it.
I find it hard to believe that this sort of module is used for teaching on al diseases? If I had to work through this sort of thing for every disease that was going to come along I would resign from being a GP or physician and go and run a cake shop or something sane.
This sort of exercise is utterly repelling. But a department seminar or a review in BMJ or Pulse that I could read when I had a quiet moment could be really interesting and change my view.
I don't see these modules as changing anyone's view because the material is presented as pseudo-medicine. It is quite clearly put together by someone who has no real idea of what the terms mean or why they are useful. People with ME/CFS have got used to this sort of pseudo-medicine as if it was the norm. It never used to be and I doubt it is even now for other diseases.
And, as I have said before, I think there is a major danger that this sort of material will just wise up the health professionals to how much ME/CFS services are just window dressing by people who don't know what they are doing. And people with ME/CFS will be assumed all to have a pseudo-illness that has to be treated with politically correct lip service according to the module but otherwise ignored as much as possible.
The more I think about it the more it seems to me that the problems for looking after people with severe ME/CFS are near enough unique. Health care professionals need to be told "Forget all your usual wasy of thinking about disease. Be a human being for a minute and look at this quite differently". No jargon. No pretend explanations.
Elara Grey
Established Member (Voting Rights)
Precisely my point actually about reforming the entire system. I wouldn't hesitate in hazarding a guess that the majority of NHS doctors are thinking similar thoughts to your description about resigning. The same goes for nurses. And they wouldn't be the first to quit to do something else for similar reasons. (Though not just the state of the eLearning).
Can't comment specifically on all diseases because generally-speaking, AFAIK, NHS e-learning isn't designed to teach physicians about diseases... otherwise what would the point of medical school be? /rhetorical
But yes, almost all NHS e-learning is repelling, or at least more repelling than this module is.
It might be worth considering that NHS e-learning is generally targeted to the whole of the NHS as its audience? With the exception of some specific modules being designated for specific roles or leadership roles in various forms. I get the impression that any NHS e-learning modules on specific diseases/or illness are nothing more than awareness modules. That's how I see the ME/CFS ones presented.
We are in agreement.
I suppose I just saw the module as an awareness module targeted to all members and roles of the NHS. And, to be quite frank, I never had any expectations that an NHS module would achieve changing anyone's view. So my opinions were formed off a very low bar to start with.
And yes, exactly this!
I just don't see anyone writing an NHS e-learning module actually putting those kind of statements to their name. Or the NHS agreeing to put such sentiments to their 'branding'. At least, not at this moment in time.
Those statements coming from the NHS would be the same as admitting a) we don't know anything about ME/CFS, and b) they need to overhaul what they are doing. Akin to admitting they are doing something wrong. And the system as it stands does not seem to do that. It seems protects itself at all costs.
So the only way I see something being produced by the NHS that has the aim of changing anyone's view completely is when research has caught up and there is tangible evidence of disease and/or a biomarker.
Yes, the pseudo-medicine is not going to help any of us. Yes, it is far from being an enthralling, mind-changing learning module. My previous comments were about it being mostly positive FOR THE NHS. Starting from a very low bar. Against the standard of their other e-learning modules, this is better than what they usually produce. But that's not to say it's all that productive in terms of what we actually need!
I guess I just never had any expectations of it being exceptionally revolutionary to begin with. Especially in its first (or slightly amended) creation. And I see the module as an awareness module for all levels of the NHS e.g. domiciliary carers looking after people with severe ME/CFS.
I doubt any e-learning module, with or without NHS logo attached, would achieve education about a disease that would completely swing physicians' views. As you rightly say, that would take something aimed at physicians, from a respected source. I'd add more importantly from inclusion in medical education. No e-learning module is going to compensate for the general lack of its inclusion in the latter.
As above, I'm not trying to defend the e-learning in its current version or argue that it's good. I completely agree with the numerous valid points and criticisms against it. And I'm on the same page that this kind of structure of e-learning is utterly repelling. Therein lies my point as to why the NHS uptake on it has been next to nothing.
Jonathan Edwards
Senior Member (Voting Rights)
But isn't this the central point? Charity representatives have been lobbying the Royal College of Physicians to ensure that all medics do this e-learning module. That seems to be the way doctors are supposed to learn about severe ME/CFS. Why would cancer and diabetes be under medical school textbooks and severe ME/CFS instead put in with fire drill, data protection and equal opportunities?
The RCP probably said yes, we will get everyone to do it, yet at the same time the RCP experts on ME/CFS think it is all make believe, physicians should steer well clear of it and starving patients will get better with psychological support.
The whole thing seems to be a fiasco.
My worry is that people will see this as having achieved something when in fact it has ensured that nobody confronts the health professional education issue at all.
Elara Grey
Established Member (Voting Rights)
Oh dear. I didn't realise the charities were lobbying the RCP.
Indeed.
Quite!
The entire situation is a mess.
Jonathan Edwards
Senior Member (Voting Rights)
I am wading through aspects of severe and very severe care and have almost lost the plot entirely. However, I had a go at downloading a transcript of the e-learning module for severe and then re-writing it how I thought made sense. It includes a lot of guff and fails to grasp the really important nettles but it does provide a template to start from. What i have so far is pasted below and attached in Word.
Management of severe and very severe ME/CFS: edited from NHS e-learning module
ME/CFS is a long-term illness, often life-long, that causes major disability through generalised symptoms, including feeling ill, exhausted, weak, and in pain, difficulty staying standing or sitting up, and problems thinking or concentrating,that we do not yet understand the cause of. In severe cases, the symptom burden means that the person is not only unable to work or go to school but also confined to home and in some cases a darkened room. In very severe cases support is needed for basic activities like feeding, washing and toileting.
There are no theory-based approaches to treatment shown to be of benefit. We do not know what ought to be the best way to manage ME/CFS. That being the case, care must focus on practical steps to minimise symptoms. People with ME/CFS find symptoms are aggravated by exertion and environmental stimuli, including light, sound, touch and odours. In a few very severe cases normal feeding becomes impossible. All reasonable pragmatic measures need to be taken to ease the symptom burden. Regimens based on speculative theories, whether of brain blood flow, mast cell sensitivity or energy metabolism should be avoided. Patients and carers should be encouraged to work out what works best for the individual, rather than being given protocols based on expectations that may not apply.
It is essential for health professionals to understand that ME/CFS presents a unique problem in terms of supportive care. Minimising environmental stimuli and demands on exertion is not simply a matter of kindness, as it would be for any other condition. It is a matter of protecting patients from deterioration, which in some cases is long term and irreversible. We have no understanding of why this should be, but it is a consistent experience for people with ME/CFS that must be respected at least until such time as we have a means to prevent it.
How is ME/CFS recognised?
The diagnosis of ME/CFS is used for people with generalised debilitating symptoms, sufficient to have a major impact on daily living, of no identifiable cause, in association with exacerbation following exertion, disturbed sleep pattern and difficulties with thinking tasks (often called brain fog). It needs to be differentiated from a range of neurological, endocrine and other conditions which may mimic it in early stages and it is important to review the diagnosis at least annually to ensure that other conditions have not become apparent.
Causes of ME/CFS:
Susceptibility to ME/CFS appears to be greatest in teenage years and then again in the mid thirties in both sexes. It is more common in women and certain autosomal gene regions are known to contribute a further level of risk. Onset is often reported to follow an infection, in particular Epstein Barr virus or Covid-19. The symptoms of ME/CFS overlap to a large degree with resolving ‘post-viral fatigue’ lasting for a period of months after such infections, including some symptom exacerbation after exertion. However, the category of ME/CFS implies a longer term, often fluctuating or progressive, course over a period of years.
The absence of inflammation in ME/CFS and the links to genes expressed in central nervous system suggest that continued symptoms may be due to abnormal responsiveness of central nervous neurons to nociceptor signals from tissues such as muscle and gut and via special senses. However, we know too little to apply this to any principles of care.
Treatment of ME/CFS
There are currently no evidence-based treatments directed specifically at ME/CFS other than practical measures to reduce symptoms burden. Avoiding symptom worsening following exertion is referred to as pacing. Most people with ME/CFS find this important. However, there is no particular theoretical basis for focusing on physiological measures such as energy usage or heart rate.
Severe and very severe grading
ME/CFS is termed severe if the person is
bedbound or nearly bedbound
only able to sit up for short periods and perform minimal self-care
requiring help with eating, washing, and dressing
highly sensitive to sensory stimuli (light, noise, movement)
requiring mobility aids (wheelchair, stair lift, or hoist)
Severe cases have
Symptom flares even with minor exertion.
Constant flu-like symptoms, pain, and cognitive dysfunction.
Severe orthostatic intolerance (cannot stand or sit upright for long).
ME/CFS is termed very severe if the person is
completely bedbound and cannot sit up or tolerate movement
requiring total care (often unable to feed themselves or speak)
experiencing extreme sensory hypersensitivity. Light, sound, and touch cause severe distress
unable to tolerate visitors, touch, or speaking
For very severe cases
Even passive activities (for example, being touched or hearing noise) cause prolonged worsening.
Nutritional support may be required due to swallowing difficulties.
Prevalence of severe ME/CFS
The number of people with ME/CFS at any one time is something between one in two hundred and fifty and one in a hundred. (As for any condition in which there are borderline cases there is probably no more precise figure.) It is estimated that about a quarter of people with ME/CFS fall into the severe or very severe categories. That suggests that about one person in a thousand may be largely bedbound with ME/CFS. Very severe cases are likely to be much less numerous, but it is likely that several thousand people in the UK fall into the very severe category and require comprehensive care.
Slider. Respond to the question by selecting a value on the scale and then submit.
Provision of care
There are no evidence-based pharmacological treatments aimed at ME/CFS itself. Where symptoms such as pain or tachycardia are covered by drugs with general application these can be used. However, people with ME/CFS often find drugs difficult to tolerate.
Care at home
Most people with severe ME/CFS cannot tolerate repeated visits to surgeries or hospitals. Most care should be on a domiciliary basis or via internet options such as Zoom. Many very severe patients are likely to find internet interaction difficult, however.
Perhaps the most important contribution that can be made to care is provision of contact with a single health professional such as a specialist nurse with a deep understanding of the current state of knowledge about ME/CFS who can provide a fixed point around which the person with ME/CFS can build a sense of context and safety. Ideally this professional would liaise directly with a physician with specialist knowledge of the condition involved in initial assessment and diagnosis. Multidisciplinary teams of professionals assigned to different aspect of care are likely to be counterproductive.
General practitioners may be in a position to provide domiciliary support but most will have little experience of managing severe and very severe ME/CFS cases and limited knowledge of the disease. District nurses may also be in a position to provide services such as blood tests, vaccinations and blood pressure readings on a domiciliary basis. However, for very severe cases a single professional sucha as a nurse specialists attached to a physician-led hospital unit is likely to be much better placed to combine care activities in an efficient and supportive framework.
Preventing deterioration
A person with severe or very severe ME/CFS needs careful attention to their daily demands, activities and environment to prevent symptom worsening and unnecessary hospitalisations, and to support quality of life. The aim is to avoid activities where exertion leads to symptom worsening and to control environmental stimuli while providing resources for activities and communication routes, such as the internet, the person can still enjoy.
Reducing environmental stimuli may help reduce symptoms but requirements will depend on the individual.
Lighting can be reduced with curtains or dimmable lights. Restricting sunlight may contribute to Vitamin D deficiency, which is likely to be an issue for all severe cases.
Sound can be reduced with noise cancelling headphones or earplugs and by reducing talking during visits.
Movements when adjusting bedding or giving care may need to be slow and gentle and the person with ME/CFS should be warned about movement and touch beforehand. A position-adjustable hospital-style bed may be useful, to optimise positioning for orthostatic intolerance and feeding. Hoists and wheelchairs can both reduce unnecessary exertion and optimise scope for activities that can be tolerated.
Joint contractures can potentially occur with disuse, the most likely probably being plantar flexion at the ankle from the pressure of bedclothes. Passive movement and re-positioning and cradles for bedclothes may be needed.
Scented toiletries and cleaning products may be best avoided.
Nutritional assessment and support
People with very severe ME/CFS are at high risk of malnutrition and/or unintentional weight loss. They may become unable to tolerate the exertion and sensory stimulus of eating and drinking (or obtaining and cooking food). Other reasons for nutritional failure need to be kept in mind but are probably over-diagnosed.
People with severe and very severe ME/CFS should be routinely screened for risk of malnutrition at clinic appointments, domiciliary visits and on admission to hospital. If there is major concern they should be referred to a specialist nutrition support team.
A stepwise approach should be followed to achieve adequate nutritional intake.
Food-based approach
The first step in nutritional management involves trying to make normal oral intake easier. This may include providing food and drink little and often, making use of drinks and snacks with high nutrient content and providing food in forms easy to chew and swallow. It may include eating and drinking aids (modified spoons, cups etc.) for feeding while lying flat. Family or professional carers need to have clear responsibilities for food preparation and feeding support and an adequate understanding of the nutritional requirements.
If nutrition is not maintained with standard foods and drinks and weight loss continues liquid oral nutritional supplements may be used.
Enteral tube feeding
Enteral tube feeding should be considered if oral nutrition support strategies fail to meet their nutrition needs, and nutritional status continues to decline, based on inadequate or unsafe swallow and a functional and accessible GI tract.
Enteral tube feeding carries risks of local complications but should not be denied on grounds that the reasons for failure to maintain nutrition orally are often not well-defined in ME/CFS.
Parenteral nutrition
Parenteral nutrition (intravenous feeding) is rarely required. It carries greater risks, such as line infection, than enteral tube feeding, and is difficult to maintain for long periods. It may be necessary, at least in the short term, if there are reasons why nutrition cannot be maintained enterally.
People with severe ME/CFS often suffer with major orthostatic intolerance problems. It has been suggested that encouraging salt and fluid intake may help with this, although the value of fluid supplementation beyond the very short term has not been demonstrated. High fluid intake may simply increase the need to pass urine. People on parenteral nutrition will receive fluids as part of their total intake. However, there is no convincing evidence of benefit from intravenous fluid supplementation purely as a management of orthostatic intolerance.
Hospital Admission
Hospital admission for a person with severe ME/CFS may be necessary for intercurrent medical problems. Acute hospitals are high-risk environments due to noise, movement, light, smells and extra exertion. Reasonable adjustments need to be made to make the hospital environment tolerable for a person with ME/CFS. These adjustments need to be factored in to planned admissions. A national or regional advisory service should be in place to assist with planning.
As emphasised in the introduction, the need for reduction in stimulation from exertion and environment for people with ME/CFS is a unique situation, being a medical necessity rather than a matter of kindness. In the absence of effective treatments, it is one of the few positive aspects of care we can offer, with major potential impact on long-term disability.
Hospital admission is not indicated for care of ME/CFS per se unless there are specific complications such as nutritional failure. Such cases should be admitted to units with specific expertise in managing nutritional support for severe ME/CFS.
A recurring issue has been the question of a safe position for enteral tube feeding. People with severe ME/CFS have difficulty maintaining anything other than a flat position. Tube feeding in this position is likely to be at least as safe as with the trunk propped up (when aspiration is more likely) for fully conscious people with competent reflexes. Nevertheless, usual care with tube placement and careful control of feed volumes is essential.
Another recurring issue is withdrawal of drugs on admission to hospital. People with ME/CFS are often prescribed drugs for symptomatic control with a doubtful evidence base. These drugs may be considered unnecessary but there is no justification for withdrawing them at the time of a hospital admission, when such withdrawal is likely to add to other stresses produced by the inpatient environment.
In general terms the minimum reasonable adjustment for inpatient environment for a person with severe ME/CFS includes a single room, effective blinds for reducing light during the day and full darkness at night, freedom from intrusive noise and no use of scented cleaning products. Communication needs should be considered, including ready access to an staff alert signalling system and written rather than spoken messaging if needed.
If a person with severe ME/CFS is to be moved around the hospital for investigations they need to be accompanied by someone who understands their needs for lying flat, protection from noise etc. and can ensure that exposure to environmental stimuli or change in position is minimised.
Management of severe and very severe ME/CFS: edited from NHS e-learning module
ME/CFS is a long-term illness, often life-long, that causes major disability through generalised symptoms, including feeling ill, exhausted, weak, and in pain, difficulty staying standing or sitting up, and problems thinking or concentrating,that we do not yet understand the cause of. In severe cases, the symptom burden means that the person is not only unable to work or go to school but also confined to home and in some cases a darkened room. In very severe cases support is needed for basic activities like feeding, washing and toileting.
There are no theory-based approaches to treatment shown to be of benefit. We do not know what ought to be the best way to manage ME/CFS. That being the case, care must focus on practical steps to minimise symptoms. People with ME/CFS find symptoms are aggravated by exertion and environmental stimuli, including light, sound, touch and odours. In a few very severe cases normal feeding becomes impossible. All reasonable pragmatic measures need to be taken to ease the symptom burden. Regimens based on speculative theories, whether of brain blood flow, mast cell sensitivity or energy metabolism should be avoided. Patients and carers should be encouraged to work out what works best for the individual, rather than being given protocols based on expectations that may not apply.
It is essential for health professionals to understand that ME/CFS presents a unique problem in terms of supportive care. Minimising environmental stimuli and demands on exertion is not simply a matter of kindness, as it would be for any other condition. It is a matter of protecting patients from deterioration, which in some cases is long term and irreversible. We have no understanding of why this should be, but it is a consistent experience for people with ME/CFS that must be respected at least until such time as we have a means to prevent it.
How is ME/CFS recognised?
The diagnosis of ME/CFS is used for people with generalised debilitating symptoms, sufficient to have a major impact on daily living, of no identifiable cause, in association with exacerbation following exertion, disturbed sleep pattern and difficulties with thinking tasks (often called brain fog). It needs to be differentiated from a range of neurological, endocrine and other conditions which may mimic it in early stages and it is important to review the diagnosis at least annually to ensure that other conditions have not become apparent.
Causes of ME/CFS:
Susceptibility to ME/CFS appears to be greatest in teenage years and then again in the mid thirties in both sexes. It is more common in women and certain autosomal gene regions are known to contribute a further level of risk. Onset is often reported to follow an infection, in particular Epstein Barr virus or Covid-19. The symptoms of ME/CFS overlap to a large degree with resolving ‘post-viral fatigue’ lasting for a period of months after such infections, including some symptom exacerbation after exertion. However, the category of ME/CFS implies a longer term, often fluctuating or progressive, course over a period of years.
The absence of inflammation in ME/CFS and the links to genes expressed in central nervous system suggest that continued symptoms may be due to abnormal responsiveness of central nervous neurons to nociceptor signals from tissues such as muscle and gut and via special senses. However, we know too little to apply this to any principles of care.
Treatment of ME/CFS
There are currently no evidence-based treatments directed specifically at ME/CFS other than practical measures to reduce symptoms burden. Avoiding symptom worsening following exertion is referred to as pacing. Most people with ME/CFS find this important. However, there is no particular theoretical basis for focusing on physiological measures such as energy usage or heart rate.
Severe and very severe grading
ME/CFS is termed severe if the person is
bedbound or nearly bedbound
only able to sit up for short periods and perform minimal self-care
requiring help with eating, washing, and dressing
highly sensitive to sensory stimuli (light, noise, movement)
requiring mobility aids (wheelchair, stair lift, or hoist)
Severe cases have
Symptom flares even with minor exertion.
Constant flu-like symptoms, pain, and cognitive dysfunction.
Severe orthostatic intolerance (cannot stand or sit upright for long).
ME/CFS is termed very severe if the person is
completely bedbound and cannot sit up or tolerate movement
requiring total care (often unable to feed themselves or speak)
experiencing extreme sensory hypersensitivity. Light, sound, and touch cause severe distress
unable to tolerate visitors, touch, or speaking
For very severe cases
Even passive activities (for example, being touched or hearing noise) cause prolonged worsening.
Nutritional support may be required due to swallowing difficulties.
Prevalence of severe ME/CFS
The number of people with ME/CFS at any one time is something between one in two hundred and fifty and one in a hundred. (As for any condition in which there are borderline cases there is probably no more precise figure.) It is estimated that about a quarter of people with ME/CFS fall into the severe or very severe categories. That suggests that about one person in a thousand may be largely bedbound with ME/CFS. Very severe cases are likely to be much less numerous, but it is likely that several thousand people in the UK fall into the very severe category and require comprehensive care.
Slider. Respond to the question by selecting a value on the scale and then submit.
Provision of care
There are no evidence-based pharmacological treatments aimed at ME/CFS itself. Where symptoms such as pain or tachycardia are covered by drugs with general application these can be used. However, people with ME/CFS often find drugs difficult to tolerate.
Care at home
Most people with severe ME/CFS cannot tolerate repeated visits to surgeries or hospitals. Most care should be on a domiciliary basis or via internet options such as Zoom. Many very severe patients are likely to find internet interaction difficult, however.
Perhaps the most important contribution that can be made to care is provision of contact with a single health professional such as a specialist nurse with a deep understanding of the current state of knowledge about ME/CFS who can provide a fixed point around which the person with ME/CFS can build a sense of context and safety. Ideally this professional would liaise directly with a physician with specialist knowledge of the condition involved in initial assessment and diagnosis. Multidisciplinary teams of professionals assigned to different aspect of care are likely to be counterproductive.
General practitioners may be in a position to provide domiciliary support but most will have little experience of managing severe and very severe ME/CFS cases and limited knowledge of the disease. District nurses may also be in a position to provide services such as blood tests, vaccinations and blood pressure readings on a domiciliary basis. However, for very severe cases a single professional sucha as a nurse specialists attached to a physician-led hospital unit is likely to be much better placed to combine care activities in an efficient and supportive framework.
Preventing deterioration
A person with severe or very severe ME/CFS needs careful attention to their daily demands, activities and environment to prevent symptom worsening and unnecessary hospitalisations, and to support quality of life. The aim is to avoid activities where exertion leads to symptom worsening and to control environmental stimuli while providing resources for activities and communication routes, such as the internet, the person can still enjoy.
Reducing environmental stimuli may help reduce symptoms but requirements will depend on the individual.
Lighting can be reduced with curtains or dimmable lights. Restricting sunlight may contribute to Vitamin D deficiency, which is likely to be an issue for all severe cases.
Sound can be reduced with noise cancelling headphones or earplugs and by reducing talking during visits.
Movements when adjusting bedding or giving care may need to be slow and gentle and the person with ME/CFS should be warned about movement and touch beforehand. A position-adjustable hospital-style bed may be useful, to optimise positioning for orthostatic intolerance and feeding. Hoists and wheelchairs can both reduce unnecessary exertion and optimise scope for activities that can be tolerated.
Joint contractures can potentially occur with disuse, the most likely probably being plantar flexion at the ankle from the pressure of bedclothes. Passive movement and re-positioning and cradles for bedclothes may be needed.
Scented toiletries and cleaning products may be best avoided.
Nutritional assessment and support
People with very severe ME/CFS are at high risk of malnutrition and/or unintentional weight loss. They may become unable to tolerate the exertion and sensory stimulus of eating and drinking (or obtaining and cooking food). Other reasons for nutritional failure need to be kept in mind but are probably over-diagnosed.
People with severe and very severe ME/CFS should be routinely screened for risk of malnutrition at clinic appointments, domiciliary visits and on admission to hospital. If there is major concern they should be referred to a specialist nutrition support team.
A stepwise approach should be followed to achieve adequate nutritional intake.
Food-based approach
The first step in nutritional management involves trying to make normal oral intake easier. This may include providing food and drink little and often, making use of drinks and snacks with high nutrient content and providing food in forms easy to chew and swallow. It may include eating and drinking aids (modified spoons, cups etc.) for feeding while lying flat. Family or professional carers need to have clear responsibilities for food preparation and feeding support and an adequate understanding of the nutritional requirements.
If nutrition is not maintained with standard foods and drinks and weight loss continues liquid oral nutritional supplements may be used.
Enteral tube feeding
Enteral tube feeding should be considered if oral nutrition support strategies fail to meet their nutrition needs, and nutritional status continues to decline, based on inadequate or unsafe swallow and a functional and accessible GI tract.
Enteral tube feeding carries risks of local complications but should not be denied on grounds that the reasons for failure to maintain nutrition orally are often not well-defined in ME/CFS.
Parenteral nutrition
Parenteral nutrition (intravenous feeding) is rarely required. It carries greater risks, such as line infection, than enteral tube feeding, and is difficult to maintain for long periods. It may be necessary, at least in the short term, if there are reasons why nutrition cannot be maintained enterally.
People with severe ME/CFS often suffer with major orthostatic intolerance problems. It has been suggested that encouraging salt and fluid intake may help with this, although the value of fluid supplementation beyond the very short term has not been demonstrated. High fluid intake may simply increase the need to pass urine. People on parenteral nutrition will receive fluids as part of their total intake. However, there is no convincing evidence of benefit from intravenous fluid supplementation purely as a management of orthostatic intolerance.
Hospital Admission
Hospital admission for a person with severe ME/CFS may be necessary for intercurrent medical problems. Acute hospitals are high-risk environments due to noise, movement, light, smells and extra exertion. Reasonable adjustments need to be made to make the hospital environment tolerable for a person with ME/CFS. These adjustments need to be factored in to planned admissions. A national or regional advisory service should be in place to assist with planning.
As emphasised in the introduction, the need for reduction in stimulation from exertion and environment for people with ME/CFS is a unique situation, being a medical necessity rather than a matter of kindness. In the absence of effective treatments, it is one of the few positive aspects of care we can offer, with major potential impact on long-term disability.
Hospital admission is not indicated for care of ME/CFS per se unless there are specific complications such as nutritional failure. Such cases should be admitted to units with specific expertise in managing nutritional support for severe ME/CFS.
A recurring issue has been the question of a safe position for enteral tube feeding. People with severe ME/CFS have difficulty maintaining anything other than a flat position. Tube feeding in this position is likely to be at least as safe as with the trunk propped up (when aspiration is more likely) for fully conscious people with competent reflexes. Nevertheless, usual care with tube placement and careful control of feed volumes is essential.
Another recurring issue is withdrawal of drugs on admission to hospital. People with ME/CFS are often prescribed drugs for symptomatic control with a doubtful evidence base. These drugs may be considered unnecessary but there is no justification for withdrawing them at the time of a hospital admission, when such withdrawal is likely to add to other stresses produced by the inpatient environment.
In general terms the minimum reasonable adjustment for inpatient environment for a person with severe ME/CFS includes a single room, effective blinds for reducing light during the day and full darkness at night, freedom from intrusive noise and no use of scented cleaning products. Communication needs should be considered, including ready access to an staff alert signalling system and written rather than spoken messaging if needed.
If a person with severe ME/CFS is to be moved around the hospital for investigations they need to be accompanied by someone who understands their needs for lying flat, protection from noise etc. and can ensure that exposure to environmental stimuli or change in position is minimised.
hotblack
Senior Member (Voting Rights)
Fantastic, thanks @Jonathan Edwards great to have somewhere to start from.