Continuing this section. I'm not attempting to make notes on all of it. Sections covered on a previous post are crossed through. I have bolded the sections I aim to cover today:
Symptom specific resources
Topics covered:
Anxiety
Breathlessness and cough
Cognition
Communication
Emotional impact of Long Covid
Fatigue
Nutrition and hydration
Pain management
Physical activity and exercise
Sleep
Mindfulness
Stress
Social life and hobbies
Voice advice
Information for people affected by Fibromyalgia
Dysautonomia - A Guided for ME/CFS
Post-exertional Malaise
Post-Viral Fatigue - A Guide to Management
Cold hands and feet
Headaches and migraines
Orthostatic intolerance
POTS
Sensitivities, intolerances and hypersensitivities
Stomach and IBS
ME/CFS - A Guide to Symptom Management
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Fatigue - specifically about PVF following Covid
Several sources listed:
Leeds Trust - Long Covid Rehabilitation booklet - A guide for patients
Northern Care Alliance - Managing Post-Viral Fatigue after Covid-19
Cambridgeshire and Peterborough Activity diary booklet, and post covid service video on managing fatigue I didn't find these.
Background information - what is fatigue, who gets post viral fatigue,
How to manage fatigue - during the infection - rest, keep activity level low, nourish, move about if possible, allow time, have fun, stop studies/work unless you feel full well.
Next steps - try activity, slowly increase activity, short rests, keep to a daily routine, don't rush, exercise carefully and resume slowly, work/study - ask for adaptations if needed. have fun.
Recognising it is difficult - expectations, acceptance, support, school, work, responsibilities - OH assessment etc.
Further info: rest, pacing, morning and evening light, naps, food
Moving forward - pvfs may take months, rest, routine and fun.
How do I know if I have ME/CFS - Most with PVFS recover within a year, ME/CFS described as severe fatigue that goes on longer and includes PEM which is described, plus other symptoms briefly described and advice to seek medical diagnosis and referral
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PEM
The PEM section is an almost exact copy of this BACME document:
Post-Exertional Malaise
August 2021 Updated February 2025
Parts of it are OK. The general picture of worsening triggered by exertion and lasting a days or weeks, and the advice to avoid it by pacing are basically fine.
Bits that concern me:
page 2
They introduce the section explaining what PEM is by describing normal fatigue that goes away with rest, then say:
Post-Exertional Malaise follows a different pattern and occurs when there is asignificant increase in the level of fatigue after doing your usual level of activity,disproportionate to what you have done. This fatigue does not quickly improve withrest. There can often be a delay between doing the activity and the fatigueincreasing which can make it harder to spot the connection.
They then go on to describe PEM more accurately with bullet points about other symptoms, reduced capacity to function, delay and duration.
page 3
A key feature of PEM is that it does not improve with one good night’s sleep. If your symptoms do not improve with sleep or rest, you may need specialist rehabilitation support.
As usual BACME recommending rehab approaches.
The final section is:
Principles of PEM Management:
• The aim is to reduce the number and severity of episodes of PEM by balancing rest and activity. This is referred to as Pacing.
• The first stage is to achieve a degree of stability or the level of activity that youcan do each day without triggering a delayed escalation in symptoms.
• Pacing involves breaking activity into small parts and taking a rest breakbefore doing another small amount of activity.
• Changing between different types of activity (e.g. mental and physical) canhelp rather than doing one type of activity until exhausted.
• Achieving good quality rest (doing nothing) can be difficult but is one of themost important aspects of managing fatigue and PEM. Activities you previously found relaxing may now demand energy and contribute to fatigue.These can include activities like watching TV, reading, talking to friends,looking at social media or gaming. Good quality rest involves reducing theworkload of the mind and body. Different people will find different types of restand relaxation work best for them.
• Slow breathing exercises can be a good starting point to get your body into a restful state. Listening to calming music or using relaxation and mindfulnessapps can be helpful. Some people find using a weighted blanket or a heatpack helpful.
• Avoiding all activity and spending long periods of time lying down can cause additional problems due to loss of muscle strength and fitness and make it more likely for you to experience an increase in fatigue when you try to do something. If your fatigue has become so severe that you are spending much of the day in bed, ask your GP for specialist support.
• Ignoring or pushing through fatigue symptoms or trying to use exercise to reduce your fatigue usually results in an increase in PEM episodes causingoverall fatigue levels to increase.
• Tracking your daily activity levels and symptoms can help you to find the level of activity you can do without triggering a PEM episode. Once you have identified your individual energy limits, try to stay within these until you have achieved a period of stability.
• Planning, prioritising, and pacing your daily activities can help to manage yourenergy levels. This reduces the likelihood of PEM episodes by working withinyour individual energy limits. It might mean doing fewer activities or doing less than you think you can but will allow you to rest when you need to andconserve your energy levels.
• If you feel you are having a good day, try to avoid doing more. Aim to stay within your energy limits and maintain the same activity and rest framework every day for a period of time.
• If you begin to notice a sustained improvement in your symptoms and arehaving more good days than bad days, gradually increase your activity levels, paying attention to any negative effects or triggers that may cause a PEM episode.
• If an increase in your activity levels does trigger a PEM episode, do not be discouraged. Wait until you feel a bit better, then try a smaller increase in your activity level.
• If your symptoms improve, your energy limits will increase, making it possible to do more activity without triggering a PEM episode.
Again, on the surface it may seem to be sensible advice - pace, prioritise, rest. But it skates over the realities of real life, the examples given are only relatable by people with mild to moderate ME/CFS, there is nothing about how to deal with severe or very severe ME/CFS, warnings about deconditioning, but not warnings about long term worsening, baselines and pacing up etc.
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ME/CFS A guide to symptom management
This is a direct copy of:
BACME ME/CFS Guide to Symptom Management
A 21 page document intended for doctors on what drugs can help some symptoms of ME/CFS such as pain, sleep, gut, and other specific problems. I haven't read it all.
The intro has a non evidence based diagram on predisposing and precipitating factors their 'dysregulation' model and symptoms which is not helpful. It also includes this on PEM with the incorrect characterisation of PEM as fatigue:
Post Exertional Malaise
A characteristic feature of ME/CFS is the way that many forms of over exertion (physical or mental) will lead to an exacerbation of fatigue and other symptoms. The escalation in fatigue can occurring during or immediately after doing an activity but the typical Post Exertional Malaise pattern is where there is a delayed further escalation in fatigue and other symptoms which can happen hours or days after the increase in activity. After a flare-up, it will often take patients a long time to recover to their previous levels. This will vary from patient to patient. Once again, no drug has been shown to mitigate this symptom
I haven't read all the details. The section on Rituximab is out of date.
Conclusion
Currently there is no pharmacologic agent that has any influence on the natural history or prognosis of ME/CFS and all patients should be considered for referral to specialist services for rehabilitation and support. Some ME/CFS symptoms are amenable to drug therapy, andit is hoped that this guide will help with their appropriate use.
Again, the promotion of the idea that 'rehabilitation' is helpful for ME/CFS.
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Post-Viral Fatigue - A Guide to Management
Copy of another BACME document, this time addressed to patients.
Post-Viral Fatigue A Guide to Management
May 2020
Specifically about ongoing fatigue after an infection, not about ME/CFS. Seems pretty sensible advice about resting as much as you need to, and restarting activity gradually once you start feeling improvement. All the usual stuff about sleep hygiene, healthy diet etc.
Says most recover within a year. Includes a section introducing ME/CFS as fatigue plus other symptoms including PEM that goes on much longer.
