Episode 12 – Learn about Severe ME

In our final episode we discuss severe ME. 

One in four people with Myalgic Encephalomyelitis (ME) are severely or very severely affected.

 Our guests for this episode are Dr Robin Kerr, a GP with over 10 years’ experience in general practice; and patient advocate Helen Brownlie, who campaigns on severe ME through the UK charity which specifically supports people with severe ME, the 25% ME Group.

To represent the voice of people living with severe ME, who are too unwell to speak for themselves, we have readings from international ME and Long Covid writing group, the Pillow Writers. These extracts are read by Laura Anne Collier, an #MEAction Scotland volunteer and Avril McLean, Senior Practitioner at Action for ME.

ME is a complex multi system illness. Its impact can devastate a person’s life. It is a biological condition not psychological as has been wrongly believed by GPs in the past. A useful analogy is that living with ME is like living with a smart phone that only charges to 20% overnight. So, if people use 5% to make breakfast and eat, 5% to wash, 5% to dress, 5% to commute they have used all their energy by 9am and have none left. For someone with severe ME meeting with a GP can use up all their energy for that day, week or month and the impact will show afterwards.

Some of the key points from the discussion are listed below: 

What do GPs need to know about severe ME?

• Approach needs to be flexible so may need adaptation, eg. allow patient to submit questions to GP in advance, have an appointment by phone and/or a home visits.
• Risk assessment may be needed first to see benefits outweigh impact on person’s health.
• Sensory considerations: low/no light, soft voice, slow speech, no chemicals.
• Harm can occur through over-exertion or pushing beyond person’s limits.
• Cognitive behavioural therapy is not curative for ME, and Graded Exercise Therapy has been debunked as it can cause harm.
• Nutrition – people may be so unwell they are unable to digest food and may need specialist support to have adequate nutrition and hydration.
• Check new symptoms are not new comorbidities. Common examples are:    Postural orthostatic tachycardia syndrome (PoTS) and Mast cell activation syndrome (MCAS).
• A range of comorbidities can result due to people being immobile.
• Coding of condition – Quality Improvement work for practices
• Data in practice needs to be accurate so that practice has a standardised approach to coding so people with ME can be identified and given the support and planning they need. 

 Resources

• Learna CPD module on ME
• Learn about ME webinar for GPs
• Learn about ME podcast episodes
• Learn about ME project and 
• NICE guideline for ME

Transcript

Learn about severe ME podcast transcript

 Hello and welcome to Learn About ME podcast series. Thank you for tuning in today. I'm your host, Clare Ogden, Head of Support Services at Action for ME, a UK charity supporting children and adults with myalgic encephalomyelitis or ME. 

 Today's episode is 'Learn About Severe ME', our 12th podcast in this Learn About ME series.

 The series is available on Buzzsprout and Spotify, and you can find links to it, along with Learn About ME webinars and Dr Nina Muirhead's CPD module on ME in the Action for ME resource, Professional development for ME.

 All these great resources are free and will help you feel more confident in diagnosing and supporting your patients with ME. We're sharing them as part of our Learn About ME medical education project funded by the Scottish Government. 

 Our guests today are Helen Brownlee and Dr Robin Kerr.

 Helen has worked to campaign and inform through the UK charity, which specifically supports people with severe ME, the 25% ME group. 

 Robin is a GP in the Borders and works with people with ME to manage their health as part of Action for ME's healthcare services team. 

 We will also hear stories from the Pillow Writers, an international group offering an online space for people with ME and long COVID to come together and write. In this episode, we discuss the impact of living with severe or very severe ME. 

 The 2021 NICE guideline on ME outlines mild, moderate, severe and very severe levels of severity for this disease. 

 Robin. Please can you tell us what sort of understanding people with severe and very severe ME need from a GP or other professional? 

 Thanks, Clare. So, several things I would say. First one is that an understanding that this is biological. It's been mislabeled and stigmatised as psychological in the past or that people are somehow thinking themselves ill. And we want to be crystal clear that that's not the case. It's a complex, multi-system illness, particularly affecting the circulatory, neurological, and immune systems. And when I talk about it today, I'd want to be clear that I'm talking about a jigsaw that we don't have all the puzzle pieces for yet. I'm a great believer that we should put together the pieces we have and try to take a view on what we can see already rather than wait till we've got all the pieces from medical research.

 But it's thanks to that research there is actually a growing understanding, and I believe what we know from medical research is probably quite some way ahead of what we're doing in mainstream medical practice. 

 One such example of that is that we know from studies where ME patients were compared to healthy controls, that the ME patient's anaerobic threshold falls with exercise, rather than rising as it does in the healthy controls. And this offers an explanation for the post-exertional symptom exacerbation or post-exertional malaise suffered by ME patients. 

 And importantly, contradicts the outdated doctrine that exercise intolerance is a result of psychological factors or deconditioning, which could in any way be improved by Graded Exercise Therapy (GET). 

 Final point I'd make is that an allergy; I always try and share with people with ME because people have told me it's helpful either to understand themselves with pacing or perhaps for friends and family to understand what it's like to walk a day in these shoes and I think therefore it can be useful for healthcare professionals to understand as well, to best support these patients. 

 Is that living with ME? It's a bit like your body is a smartphone that just charges to 20% overnight. Because before the illness, if you used 5% to get washed, 5% to get dressed, 5% to make your breakfast and 5% to commute, you arrived at work still with 80% in your battery, not even realising you'd used 20%. Whereas if you did those same four things now on a 20% charge, you're goosed and it's not even nine o'clock in the morning.

 And so to keep the phone analogy going to pace, you've then got to be so tactical about how you use your apps. And I think people get that because whilst they've maybe not had ME, they have had to get by with their phone a long way from a charger. 

 So if you go into the news app, you don't read the in-depth article that the investigative journalist has spent months researching. You check the headlines. If you go into the sports app for your favourite football team, you don't read the match report. You just check the score. And that's how we're tactical about using energy, and that's how we're tactical about pacing. And I think it's important for people who are looking after people with ME in a medical context to realise they've not got a lot of battery to work with. And their appointment with the healthcare professional is going to use up a lot of that battery that day. 

 Helen, please can you tell us what sort of understanding people with severe and very severe ME need from a GP or other professional? 

 A basic familiarity with the biomedical evidence to start with can be helpful, and that's where Dr Muirhead's module can be very relevant. It aims to equip doctors with an understanding of the biomedical narrative. 

 In terms of severity, this is a very severe illness. It may be interesting to know that not that long ago I contacted a professor, Philip Peterson, who had done work in his clinic in Minnesota fully 30 years ago. And what he shared with me three decades on was, my main memory was the epidemiologist who was going to do a graphic representation of the patient's level of function actually had to redesign the scale and the graph because she'd never come across a group of patients that scored so low.

 And this was the, if you've heard of the Medical Outcomes Study Short Form, it's a very well-known internationally recognised measure. It's not that they came up with some odd measure. 

 It is a very severely impacting illness and there is a spectrum of severity so not all severe and very severe patients are equally severe or very severe but what they will have in common and have in common with other people with ME is that if they exceed their limits which can be very narrow they will pay a price so that's something that's really important for the doctor, and other health professionals, or anyone visiting them to understand. The patient isn’t trying to be awkward if they say, ‘Please talk quietly.’ They’re just trying to preserve the best quality of life that they can have.

 And in many ways, ME is a bit different to the sort of regular medical perspective, certainly in current times where it’s quite common to ask patients to set goals with the idea that they’ll gradually improve a bit. This just doesn’t happen with ME. And actually, I would say the psychological keynote is sheer frustration because the motivation to live your life and the awareness of what you’re missing is there. So, you know, I often had people saying to me they were, quote unquote, encouraged to do this, that and the other, but they found it anything but encouraging. It simply kind of told them that the doctor didn't understand what they were up against.

 And I think I'd just like to finish with a bit of word of understanding for the general practitioner, because it's not that common for general practitioners to be taking the lead, possibly even having sole care, of patients who are so ill and for so long. And, you know, there are things you can do that will help the patient and that the patient will appreciate. And I guess we'll come on to that in a response to other questions. 

 Robin, how can GPs support someone with this multisystem condition when it is severe? 

 Clare, I'll maybe start with the definition of what severe ME is taken from the NICE guidelines in 2021. And it says that people with severe ME are unable to do any activity for themselves or carry out minimal daily tasks such as face washing or teeth cleaning.

 They have severe cognitive difficulties and may depend on a wheelchair for mobility. They are often unable to leave the house. 

 So, for example, a telephone appointment could be preferable to a face-to-face appointment that could have advantages from the person not having to expend energy travelling to the surgery. That could have advantages. They may have a degree of light or sound sensitivity, which is common with severe and very severe ME and some of the co-pathologies that go with the illness. Potentially looking at a home visit if there's some examination required, but being mindful you're probably going into a dark room. Be careful with this situation. Use of sound, slow pace of language because you're dealing with a cohort of people that, as the definition says, have severe cognitive difficulties.

 So, you may need to explain things slowly, you may need to explain them for so long, you may need to provide a written record or explain things to well-meaning relatives or carers as well. 

 Another thing I've found patients do, and it's something that we do in my work with the charity, is that people often submit in writing what their issues are in advance. And that means rather than putting somebody cognitively impaired on the spot in a busy 10-minute appointment, they've actually maybe taken days or maybe weeks, depending how their energy management is going, to write down succinctly what the issues are and what they're hoping to get from the appointment. And I'm sure all of us have experienced that in appointments for various things.

 Allowing somebody maybe to present that written record at the start of the appointment saves them having to expend energy explaining themselves. And so it's really just being adaptive to how you go about your business because the standard approach probably is going to not be most effective for these people. Be proactive in looking for co-pathologies. We've got a publication recently that shows that autonomic dysfunction and the various ways that can manifest, including postural hypotension or postural orthostatic tachycardia syndrome, PoTS for short, is up to 80 times more common in people with ME and long COVID than the general population. And so, this is a diagnosable and treatable co-pathology that could have a significant impact on quality of life. So be proactive in looking for this.

 MCAS as well, mast cell activation syndrome, another condition that commonly is found in ME patients and again can be treated with admittedly off-licence but inexpensive medications, and dietary changes, in some cases with significant improvements in quality of life. Go proactively looking for that. Be open-minded. If someone has new symptoms or a change in their presentation, don't just assume, oh, it's their ME. It must be their ME. Shrug the shoulders, move on. People with ME can still get other illnesses as well. You can't just badge it all as being their ME. 

 So be open-minded to investigate for other things and be pragmatic as well. If the investigation would perhaps involve a trip to secondary care and a huge amount of energy expenditure, perhaps a trial of treatment would it be more suitable than doing a definitive test that you would have done in a non-ME patient? 

 So just be mindful of that 20% battery and think how much you taking a standard approach to this person, how detrimental that could be to their battery. So be reactive and dynamic to that person's circumstances. Assisting with symptom management, depending what that may be along the way. Assist with maintaining independence. If you've got a physio or an OT that's sympathetic or understanding to people with energy-limiting illness, they can potentially allow them assistance to have some degree of autonomy in the home. A dietician can advise on low histamine diets and salt-based diets for PoTS and MCAS. Avoid the old nonsense. There's no role for graded exercise therapy. That research has been completely debunked. You're not going to exercise people better. You stand to make them worse, so don't do it. 

 Psychological support has a role, but understanding it is supportive and not curative. Often, I find these people are grieving for the person they once were and therefore psychological support absolutely has a role. But you're not going to cure them with this and don't try and convince them otherwise. As Helen rightly pointed out, there's a real lack of services here. And so often all of this is going to fall to the GP. They're not going to have a wider team or a secondary care team to assist them. And so potentially you will find yourself having to discuss with social work, or occupational health, or employers, or insurance companies, or DWP; and that’s something that's already been touched on. I'm not going into the most depth into the passive physiology, but if you are interested, Nina Muirhead and I did a tutorial on this, a webinar through Action for ME, and in conjunction with Clare and Avril, and that's available at the Action for ME YouTube page now, if you're interested to learn more. 

 Helen, how can GPs support someone with this multi-system condition when it is severe?

 To sort of state the obvious, it will depend to an extent on what the patient's actually presenting with. And, you know, just to focus for a moment on the most severe end of the spectrum, I'm quoting here from a very severely affected patient who was recognising that often professionals think 'oh the person's got fatigue and their sleep may be disturbed and there might be a bit of pain' and then they're faced with a very severe patient who might have contractures, might not be able to speak, might have muscle spasms, might present with seizures, difficulty chewing and swallowing.

 Incontinence is way more common than is generally understood in severe ME. There may even be difficulty breathing. So, you have to first of all get a handle on what's actually affecting the patient in front of you. And then depending what that is, there are things that could help alleviate the suffering. 

 A very important issue is where the patient is struggling to take in adequate food and drink and/ or drink by mouth, but I just wanted to flag up that when that happens it's very, very important to be on to it promptly-don't sit back and think 'oh, you know this will improve' and let's wait till the patient's lost weight. Um, also recognize that building on what Robin was saying about you can't use activity to improve many severely affected patients actually were not so severely affected until they transgressed their limits.

 And not always through something that you could call exercise. For example, I supported one patient who for a long, long period lost the ability to speak. And that happened because her mother, who was her main carer, died, and the patient then had to engage with professionals herself for community care assessment; for this was England, so there was NHS continuing care assessment. And she just completely lost the ability to speak thereafter, because that had transgressed her limits, so there's a real need for respect, and to be aware that when you see the patient, you're not seeing the after-effect of the input the patient is having to make to engage with you. I would recommend the Doctors with ME site has some very helpful tips for doctors; just to flag up one or two of them.

 Be aware of any sort of inflexible approach, including in some quarters, sleep hygiene like strict 'fall asleep at a certain time and wake at a certain time'. This is not helpful to people with ME and the reports are that really makes people worse; symptomatic relief yes, but as per the NICE guideline, start low go slow, be aware that um some people are particularly sensitive to medications. Also, I think just be aware that as a doctor, your evidence can be absolutely crucial as a gateway to disability benefits and also for support with social care assessments, which are increasingly based on perspectives of objective evidence; and sadly, what the patient says about what's affecting them and why they need care is not considered to be particularly cogent evidence in either regard.

 So, people who are very severely affected and live alone really desperately need practical support from the medical profession to back up their claims and their needs for benefits and for social care. 

 Robin, what risks do doctors and allied health professionals need to be aware of when providing medical care for a person with severe ME, and how can these risks be mitigated? 

 First one I think expands on a point I was making in one of my earlier answers that permanent harm can result from overexertion or inappropriate advice, and so that's why I've tried to be really clear about the lower anaerobic thresholds and about the inappropriateness of graded exercise therapy, because telling people that they just need to give themselves a shake and push themselves harder to get over it is detrimental and can put themselves into a hole or an exacerbation or a crash, or whatever other term people put on it. People use different terms for their illness here. But it's post-exertional symptom exacerbation, post-exertional malaise. 

 Overexertion can move people from a moderate to a severe or a severe to a very severe in terms of their categorisation. And therefore, we have to be, back to the battery, very mindful that our approach to these people is light touch and medically effective but tailored to that person's limited energy supply. 

 Next point I’d make when we're looking at people with severe and very severe me is nutrition these are people that will not have the ability to prepare food for themselves and in the most severe cases will not have the ability to ingest of their own accord food that's prepared for them they'll maybe need somebody to feed them or they may need kind of parenteral type support so in conjunction you can then get along with the autonomic dysfunction conditions like gastroparesis that we're probably if I go back to my education we're only particularly familiar with that in diabetics but diabetics get it because their autonomic dysfunction is off and this cohort of people have dysfunctional autonomic nervous system as well, so there can be a whole host of things to cause nutritional problems, and so be mindful and alert for that.

And then I think also just as I'm taking a step back from ME, but just being more holistic, there's a whole host of comorbidities that can arise from prolonged bed rest, lack of mobility, lack of daylight. So, be that, pressure sores, thromboembolism, vitamin D deficiency, to name but a few, being alert to these possibilities and proactive in seeking them out and managing them stands to offer better care to people with severe and very severe ME.

 Helen, what risks do doctors and allied health professionals need to be aware of when providing medical care for a person with severe ME and how can these risks be mitigated? 

 I would just underline first of all what Robin has said about the approach to care. If the person is particularly sound sensitive, keep a low tone of voice; cognitive difficulties, speak slowly. Some people with severe and very severe ME cannot tolerate bright lights, or even in one extreme case, I came across any light at all. And the difficulty is, if that's not respected, it does make the person worse. So, it can make it difficult to provide care, and it certainly makes life very difficult for the patient. Two points I would pick out, and they're both very clearly flagged up in the current NICE guideline.

 One point is professionals are advised to do a sort of risk assessment on each interaction with a person with severe or very severe ME in advance to ensure the benefits outweigh the risks, notably by worsening the symptoms. So, on the one hand, you don't want to lose sight of the patient, and there's a big issue of failure to carry out home visits and patients becoming invisible. But, on the other hand, the fact that the patient can be made worse by any sort of sensory input has to be borne in mind. 

 In terms of nutritional support, if it is felt advisable to be monitoring a patient's weight and the patient is bed-bound, there are methods, I believe, taking the circumference of the upper arm gives a proxy for weight; and that's preferable to demanding that a patient get out of bed when they might then lose what little function they've got to get out of bed and stand on the scales.

 The other point is the very real risk that the outcome of being so severely affected by illness is confused with signs of self-neglect. The patient might not be managing to wash their hair, not managing to keep a tidy house. This happens all too frequently. In fact, I encountered one particularly previous case just yesterday. The professional's view of why the patient's living circumstances are what they are is very different from the reality of what is stopping the patient from living the life they would want to live. So just be very, very aware of that risk. Obviously, no professional wants to miss an actual case of abuse or neglect. But on the ground, the big issue for people with very severe ME is their circumstances being misinterpreted.

 Robin, given that the most severely affected are often receiving the lowest level of support as they're unable to reach out, how can GP practices address this to ensure they get the support and care they need? 

 First one, this is maybe a kind of technical point. And so maybe it'll make sense to the GPs listening, but I'll try and just explain it for a wider audience. And it's a standardised approach to coding. So, GP medical records rely on codes. And so, for example, everyone in the practice population that's had a heart attack in the past. Will be coded as having ischaemic heart disease and it means that the data people in the practice can then run a search for that code every year and make sure that everyone with ischaemic heart disease code is invited into the practice to see the practice nurse to make sure their blood pressure is correct, are they needing help to stop smoking? Are they on the right medicines to try and prevent that happening again? 

 And unfortunately, in ME, we don't have a standardised approach to coding. I work as a locum, so I cover several different practices and therefore I see that it changes from doctor to doctor and it changes from practice to practice. In reality, a lot of people will have their notes filed under the symptom they first presented with. So maybe it's fatigue, maybe it's tired all the time, maybe it's dizziness, maybe it's insomnia. And then their notes, like a kind of digital filing cabinet, have just stayed under that heading since. And so if we tried, or on a practice level tried to have a standardized approach to coding and you were able, like my ischemic heart disease example, to do an annual search for people with an ME code, then you would be far more able to enact the recommendations and the NICE guidance that adults have a care plan review annually.

 Children with ME have a care plan review every six months. Sorting out the tech then allows the care to happen and so potentially if you're listening to this as a GP it would be a really good bit of quality improvement work in your practice and something you can talk about at annual appraisal to try in your practice, develop a standardised approach to ME coding, because that then allows you to seek out these people proactively and try to enact some or all, if we're being really ambitious, of the things that Helen and I have talked about in this recording. You may have a local clinic – reality is, in the UK, you may not, but you can make contact with for these patients.

 By way of genuinely seeking to help them, but also a bit of a plug, consider Action for ME as well. We have a lot of very knowledgeable and competent staff. We can do nationwide video calls to provide medical assessment. For these people and make suggested plans going forward; we have a bursary system recognising that people can potentially steer people in our direction if you're feeling a bit of a loss as to how to help, and you would like a specialist consultation from myself or one of my colleagues, might also be something to consider. 

 Helen, given that the most severely affected are often receiving the lowest level of support as they're not able to reach out, how can GP practices address this to ensure people get the care and support they need?

 I think this may be breaking down a little in that with the use of phone appointments and video appointments, it's not always necessary for the doctor to see the patient face-to-face, although there is no real replacement for that. I wouldn't suggest that the doctor never ever sees the patient, but it does help get around the difficulty of doctors being very pressed for time. But making home visits is important. You know, it wouldn't be the first time you'd heard of a patient contacting the surgery and being told, 'No, I just can't come in. I can't. I'm housebound.' Oh, well, wait till you feel better and make an appointment.' And no use at all if you're consistently housebound, so certainly just sheer recognition that you need to be creative about and revert to home visits as needed.

 We've already spoken about um different communication formats-you know, having the patient maybe prefer to write things down in advance, so they're not having to think on the spot. I think just engaging with a specific patient to discover what works best for them is really important. And willingness to set aside standard protocols. I've mentioned about different ways of assessing weight as an example. And basically, understanding your patient and not misunderstanding your patient will really help to keep the door open. Sadly, there are far too many people with severe and very severe ME who find such a clashing lack of understanding that they actually just try to withdraw from services that really should be there to help them.

 So, you know, delighted that this podcast is being produced and the whole series; the Learn about any project because it's absolutely vital, and it will, it will help patients, and I, you know, I hope this is a good start on severe and very severe ME. 

 Thank you, Robin, and Helen, for joining me today. We're now going to hear some readings from the Pillow Writers, an international group offering an online space for people with ME and Long Covid to come together and write. 

 My name's Laura Ann Collier. I'm a volunteer with #ME Action Scotland, and I've experienced many of the things that have been described by the Pillow Writers as well as a person with ME. 

 Pillow Writers on quality of life: 

 ME? Resting in bed? How bad can it be? 

Bad. Very bad, in fact. Look at quality of life for example. This can be measured using internationally recognised questionnaires, and when compared to those with 20 other conditions including cancer, renal failure and schizophrenia, people with ME have the worst life quality. Rock bottom. Not surprising given that a quarter of those with ME are either housebound or bedbound. 

 It's bad, but is it common? Yes. Six times as common as multiple sclerosis. Twice as common as type 1 diabetes, even more common than rheumatoid arthritis. 

 Hello, I'm Avril McLean. I'm the Projects and Participation Senior Practitioner at Action for ME. And I'm going to read from 'The Pillow Writers' on post-exertional malaise. 

 Today, my body jolts with each excruciating electrical arc in my brain, like lightning bolts, one right after the other.

 I can no longer tolerate light or noise. My brain has been altered since yesterday. I no longer know it and I no longer know you. Not in the way of yesterday. My memory has forgotten your name, the conversation that gave us joy and the waitress's face. I only know that yesterday, a good ME day, I existed with you. Today I exist with darkness, isolation, and pain. So much pain. 

 You only see me on a good day. The day after is when you see ME. 

 This is Pillow Writers on exercise being dangerous. 

 Like most people, I believe that being fit would ensure better health. I mean, I had good reason to believe it. With clinical depression, exercise was always my go-to preventative. So you can't really blame me for believing that exercise helps everything. Unfortunately, this false belief cost me the health I had. 

 If there hadn't been such a stigma around myalgic encephalomyelitis, chronic fatigue syndrome and now long COVID, I might have sought contact with other patients and I might have heard of the dangers of exercise in these illnesses and the need for pacing. I feel very foolish now because while others with ME, CFS, LC were harmed by being persuaded or forced to engage in graded exercise therapy, GET, or some variation of it, I did it to myself. 

 Although I hadn't been able to work for most of my 20s, I did work for over two decades after that, albeit by not having a life outside of work, sleeping and resting all that other time in order to manage. Pushing through the exhaustion of every day, I found out the hard way that this was a terrible idea. 

 Towards the end of 2015, as I turned 50, my health crashed suddenly. Here's a stupid bit. For the following year, I decided to try and exercise myself better. Having always been a walker, I chose to increase the length and speed of my daily walks incrementally. I did not know that I was permanently damaging an already broken energy system. In the end, I was left unable to work to earn my own living and have been mostly housebound since 2017. I regret so much clinging to that false belief in exercise being the cure instead of paying attention to my body and recognising what was actually going on. 

 My current level of disability was preventable. There is now a wealth of evidence and knowledge about the pathology of these illnesses, and if they had been included in medical education over the past few decades, I might still be healthy enough to continue the work I loved. 

 Now I'm frantic about people with ME, CFS, LC being advised to engage with GET. I want to scream from the rooftops: just don't do it, you have a high risk of permanent disability. But who would listen? Would you? 

 So I'm now going to read someone's writing from the pillow writers on exertion and this experience may not be similar to many people with severe ME. 

 Grilled cheese

 In the early stages of myalgic encephalomyelitis, ME, one recognizes that physical exertions drain energy. However, physical efforts are not the only exertions that can deplete energy.

 In my experience, cognitive efforts can also result in severe energy depletion to all bodily systems, not just the brain. Prior to becoming disabled by ME, I was employed as a scientist, with 17 years of my 23-year career spent working remotely. Because I worked from home, physical exertions during my workday were not significant factors in body-wide energy loss. Rather, it was the cognitively heavy brain responsibilities that I completed as part of my employment that began crashing my evenings. At the end of one particular work day, after hours of elevated yet typical cognitive effort, I found that I could not physically cross from my home office to the kitchen, a distance of 12 steps, to make my young son a grilled cheese sandwich. My body felt like it was shutting down with each step and in fact it was.

 I collapsed at step nine, three quarters of the way to the kitchen. I laid horizontal until I was able to rise on my own. It took 30 minutes for my body to create enough energy to complete the remaining three steps to the kitchen and very painfully prepare the grilled cheese sandwich. And that was all I could do. I am a mother who never lets her child eat alone. I always provide company and conversation, but when my son sat down at the table that evening, he had to eat alone. It wasn't that I did not want to be with my son, I desperately did. It was that I no longer had the literal ability to sit, stand or perform the important cognitive functions required for conversing with a 12-year-old.

 The bits of energy replenished during my 30-minute collapse had been consumed as easily and quickly as my son had consumed his beloved grilled cheese. For years I wondered how I could have been so physically spent as to not be able to sit and communicate with my son. But it turns out it was not the simple matter of lacking physical energy. Any kind of heavy expenditure can severely deplete a person with ME. In reality, it was the cognitively heavy efforts of my workday that emptied my body of all but nine steps, reducing me to a veritable puddle in the midst of my son and his grilled cheese sandwich. 

 Thank you all for joining today. 

 For more information and advice on severe ME

 Please check out the links on the podcast landing page to 

·       the NICE guideline for ME

·       the great resources from the 25% ME Group and

·       the brilliant book by the late Emily Collingridge, who had severe ME and consulted with patients, carers and health professionals to produce her guide.

 I'm Clare Ogden, and this has been the 'Learn About Severe ME' podcast. 

 Thank you to our project partners,# ME Action Scotland, the ME Association, and Dr Nina Muirhead for their support in creating the podcast for this project, and to our listeners for taking the time to listen today. 

 This podcast was produced by Zoe Anderson.