The dearth of healthcare for people with ME - and how an inquest verdict will change this

 This last week or so, while most of the U.K. has been following the unrest and riots, or glued to coverage of the Paris Olympics, in a small corner of Devon a very important inquest has been conducted. That of Maeve Boothby O’Neil who died at age 27  “from malnutrition caused by severe ME” (The words of the Coroner). It is beyond shocking.

I have refrained from commenting too much, because the death of a young person with ME is just devastating. One cannot imagine the heartbreak for that family, and on a personal note, it can be quite triggering, sending one back to those very dark days post diagnosis when one discovers that nobody in the healthcare system actually knows much about ME, and that appallingly in the 21st century, there is no treatment or cure. 

It is only recently that diagnostic criteria for ME have become more focused. ME is now officially recognised as a neurological condition.

In 2021 the NICE Guidelines were re-issued, removing the harmful Graded Exercise Therapy (GET) in favour of a more patient focused approach to treating the symptoms of this little understood condition.

The guidelines also included a symptom severity and disability rating scale, ranging from very mild to very severe.

https://www.nice.org.uk/guidance/ng206/resources/myalgic-encephalomyelitis-or-encephalopathychronic-fatigue-syndrome-diagnosis-and-management-pdf-66143718094021#page7pages 7-9.

I consider myself very fortunate to only be moderately affected.

“Fortunate”???  “Only”???  I hear you ask ……..

But as I have mentioned in previous blog posts, it’s horrible, it’s disabling, but some are far less fortunate and are severely affected by ME.

They are usually confined to bed, intolerant of light and noise, have little social interaction, and rely heavily upon family to care for them, because they are often incapable of doing so themselves.

But it’s tragic to think that ME can be implicated in the death of someone with severe ME.

The week of the 5th to 11th August happens to be Severe ME week, where the plight of such severe cases is highlighted (by others not so severe) in order to raise awareness.

We have to raise awareness because, as I have said before, ME gets very little press and attention in the world. And the medical community world wide, not just here in the U.K. doesn’t know how to treat people with ME, because they don’t understand it, there’s only symptom management and no magic bullet.

Unlike other more well known illnesses such as Parkinson’s, MS, Cancer, and Diabetes, which are just as disabling and life changing, ME has not received the research funding and general health education of professionals, and care within all healthcare settings. 

I’m sorry to say ME has been neglected and ignored.

(Even I didn’t believe my own diagnosis, which for a Nurse of some 43 years standing was strikingly revealing - I’d never been taught about ME).

So Maeve’s inquest has come at a very pertinent time.

Things have to change. And the ME community, charities, and healthcare professionals who do understand and care for people with ME, all very much hope that the inquest findings will galvanise those concerned into action.

Andrew Gwynne, Minister for Public Health, said at the inquest that Maeve had “fallen through the cracks in the system”. Her father stated that she had fallen into a “deep gaping hole”.

However you look at it, this cannot happen again, ever.

I conclude with Andrew Gwynne’s statement 

“Every patient deserves to have their condition understood and treated to the highest standard “.

My thanks to those who have spoken up for people living with ME, at this inquest and in its wider reporting. We’ve got to keep sharing our stories, because someone will listen.

Sue Hardy 10/08/2024

A very English Heatwave

I wrote this at the end of last week, and then completely forgot to upload it! I blame the sleep deprivation!! 

We have just experienced a week or so of exceptionally high temperatures here in my part of the world.

When the daily average is in the upper 20’s degrees Celsius. And it doesn’t cool down at night.

It affects everyone and everything, I understand that. Having ME just makes life somewhat more difficult. 

One of the unfathomable aspects of how ME affects me (and many others) is my ability to regulate my own temperature.

I always used to be a “cold” person, Andy would hate it if I warmed my cold feet on him, and patients would ask me to warm my hands up after experiencing my chilly mitts on them when giving a bedpan!!

So to have the table turned has taken some coping with. Obviously being a woman of a certain age didn’t help, but when HRT helped the flushes but NOT this awful feeling of being so overheated I had to take my ME into account. And it turns out to be one of the myriad of unexplained symptoms. Great!!

So when a heatwave hits I have to really think carefully about my day, how I pace myself and take extra steps to ensure that I can stay cool and hydrated.

We don’t have air conditioning, but the car does so that can be helpful.

There are fans all over the house, strategically positioned for maximum comfort wherever I happen to be. Including 2 in the bedroom which you may think is excessive but it’s also about having a quiet appliance that can stay on all night and not disturb my already disturbed sleep.

The flasks that keep drinks cold are amazing, and 2 years ago when I had my knee replacement in the middle of one such heatwave, icing my knee was fantastic!

As I have said before, pacing is about energy management, so in very hot weather the body is working harder to maintain a normal temperature and dispel the heat. Normal people feel more tired in hot weather, so add to that ME and very limited energy supply and recovery, it soon becomes apparent that other activities have to be curtailed in order to use the precious limited energy on what’s important.

Then gradually as the weather cools down again to a normal British Summer, a more normal baseline of activity can be resumed.

So, what happens to all the jobs and chores etc that didn’t get done because I was conserving energy? Well, to be honest they often just get left and added on to the bottom of the list. I can’t play catch up because that would mean using energy that I don’t have to complete the tasks, which would put me into relapse, meaning more jobs and activities don’t get done.

Life with ME is a daily balancing act. Working out what is necessary, but also trying to do some things that are nice for me, and not just household chores or cooking the dinner. I’m good at delegating, and my family are 100% brilliant at taking more of their share and helping me.

So this is why I share this blog.

To illustrate tiny snippets of my life living with ME, a condition for which there is no treatment, and which currently is largely ignored by the NHS and the Department of Health. I hope for change, and if by reading and sharing my blog I can go some way towards improving things then I will have done my bit.

So heatwave? Yes, but not something that everyone can enjoy. Thanks for reading.

Proceeding with extreme caution - when strength is required

 Bob Marley has a famous quote 

“You never know how strong you are until being strong is your only choice“

It’s coming up 5 weeks until my crash/flare started. I didn’t leave the house (other than to walk out the back door and sit on the patio) for 16 days, and didn’t drive my car for 21 days.

Quite something for me, as I always have some small errand to run or somewhere to go. Appointments were cancelled and errands picked up by Andy & Peter.

I even changed a rare face to face GP appointment to a phone call - I can imagine the receptionists face as I said that I was too ill to go in person.

So for 2 weeks I did zilch, nada, nothing.

All the time thinking about what needed to be done. The temptation when you begin to improve is to just go back at life at 100%. However I knew that if I did so, I would soon become incapacitated again.

The mantra had to be “Proceed with caution “ do not under any circumstance do more than you have planned and take life very very slowly.

The family soon got the hang of it, yes Mum was up and dressed but definitely not firing on all cylinders, physically or mentally. They would be called upon to serve up dinner after I had managed to put it in the oven, or carry something downstairs. 

My brain fog was in its element especially first and last thing , the malapropisms were hilarious, humour is so important when your brain thinks one thing and your mouth utters something different!!!

Even writing addresses for letters and parcels has been problematic I discovered weeks later as things don’t arrive ……

Pacing has been the subject of an earlier blog, but this has been the first time in very many years that I have had to be absolutely meticulous and methodical in my daily allocation of energy.

Made even more tricky by ongoing health issues with mine and Andy’s elderly parents. This probably being more of a psychological drain on energy than a physical one, but all the more important to the matter of pacing.

I was horrified when I discovered that Mum had had a fall and not told me until 3 days later when she could conceal it no longer, and had sworn certain people to secrecy. An absolute nightmare!!

Hard decisions have had to be made about certain plans and whether they could be kept or not attended. That’s so hard because my social life is not exactly packed when I am functioning at my “normal” level. People understand but it’s still frustrating.

Thankfully we have social media, and the technology to remain connected via various ways that don’t require physical presence. 

So here I am at four and a half weeks, just beginning to plant up my pots with the bedding plants that I bought on the day I really should have read the signs and not gone plant shopping! Most of them have survived, they have been kept hydrated in some garden trays and whilst the slugs and snails have had an all you can eat buffet by our back door, they have been beautiful to look at in their temporary location.

For me, not having the energy or inclination to do stuff because I felt so ill, is not new. That it went on for a good 2 weeks was a big shock, and then a further surprise is that I am at this point still not back to being able to do as much as I could before the crash/flare.

And I am left asking myself, “when will normal service be resumed?”

Will I ever get back to that point?

I’m confident that I will, I just have to give it time.

When ME Symptoms Flare

 Living through a ME Flare of symptoms 

People have different names for it, the time when the Post Exertional Malaise (PEM) just gets worse and worse, to the point that you just have to stop and rest.

In fact many only refer to a relapse of symptoms when the crash or flare has been going on for a period of time.

You may be wondering why, when I have been writing about pacing and working within my symptoms, do I need to write about when pacing isn’t enough?

Sadly for those of us with ME, pacing isn’t always enough. And symptoms sometimes rear their ugly head, regardless of any mechanism that we might put in place to prevent it. 

I find myself in just this situation this week. And it’s hard.

When you are floored by symptoms so severe that all you can do is rest and sleep. Life has to go on hold, because you have to allow yourself to recover, but also because you are incapable of doing much else.

People sometimes describe that you know you’re really ill because there can be £100 on the floor, but you are just too ill to pick it up.

This statement flits through my head as I lie on the bed, cuddling the dog (they ALWAYS KNOW when you are ill), dozing and listening to the sounds of the house going on without me.

Ludo, my lovely Labrador, keeps trying to lick me all around my face, ears and neck. The places where my lymph glands feel like sore rocks, how does the dog know this?

As well as all the swelling of lymph glands, I have a myriad of other symptoms that are basically just my usual ME symptoms but just 10 fold worse than normal. It’s an effort to move, turn over or get out of bed. Walking downstairs requires immense effort and concentration. Luckily I have Andy and Peter here to cook, and to bring me the occasional mug of tea upstairs.

The days pass in a haze of sleep and the normal house routine.

Appointments have to be cancelled and rearranged, other people have their lives disrupted because of my incapacity.

As I lie on the bed I do a check around my body, any glimmer of a change? No, not yet. So lie here I must. We don’t have a TV in the bedroom so in the evening I am in my recliner chair. The dog a little less confused because this is normal, everyone watching the TV. With the volume as low as we can tolerate because I have a sudden severe aversion to loud noise.

People ask, will I sleep at night after sleeping all day? And I say yes, I can, because at the moment my body is telling me to sleep for England, I need little encouragement.

As the days progress family get told that I am not well, nothing to worry about it’s “just the ME”, more plans rearranged or cancelled.

The headache, muscle aches, joint pains and swollen glands just continue. The regular medication is taken. There’s nothing extra to take unless you want to be completely spaced out, they don’t suit me I’ve discovered!! 

Hopefully after some days of full rest, symptoms will improve and the flare will begin to resolve. 

Then begins a period of very careful pacing, my day and my week.

Very very gradually resuming my normal routine and schedule.

A month from now you probably won’t know anything was wrong.

But for now, I must rest, and rest some more. 

What causes this flare of PEM?

Overdoing things physically? Excessive emotional response or stress?

An infection or some other “normal” illness that throws the body out of equilibrium? 

Being too social? Too sensitive?

And my answer? Any or all of the above.

Hopefully one can try and avoid it happening again, but sometimes it’s just a very unique set of circumstances that have caused the situation.

It’s part of life with this mysterious illness.

I Hate Missing Afternoons - PACING & How to use limited energy

 This weekend just gone we had family visiting on the Sunday, and after a lovely Sunday lunch I then went upstairs to take my rest. And yes I was feeling tired after the cooking but, this afternoon rest is a daily occurrence and is part of my daily pacing routine.

And whilst it is beneficial, it’s also the worst thing ever.

Because I have to miss most of the afternoon EVERY DAY, and for the foreseeable future. It’s pants, to coin a phrase. And in the spring and summer when we have glorious sunny afternoons, I really do feel that I’m missing out on life.

So why do I do it?

Pacing is different for everyone, and is a great way to manage energy levels, which are very precious to people who live with ME. 

There are many theories on energy management, but they all have a common theme, how to manage a finite amount of energy and ensure it gets spent efficiently.

I often describe it as having a partly charged mobile phone battery, and you have to make it last. Something we can all relate to!

In ME sleeping does not mean that my “battery” gets fully charged. I wake up with only the partial charge. 

Every activity uses up energy, so each day has to be carefully planned out to ensure that I don’t drain the battery completely flat. And that’s where the afternoon rest comes in to do a little top up.

Other theories include The Spoon Theory, The Energy Envelope and Energy Conservation. You find what works best and what you and your family understand.

I am currently trying a free online App tool from VISIBLE, it measures heart rate variations against specific symptoms and gives a score each morning to help plan and pace the day. Having been pacing by myself for 8 years now I am quite intrigued to see how this app result correlates to how I feel each day.

Part of learning how to pace is learning what activities and actions use the most energy, as well as noting what is off the list of allowed activities.

Activity that induces severe post exertional malaise (PEM) is best avoided at all costs, and this will also depend upon the severity of your ME.

For someone with moderate to mild ME walking 200 meters at a gentle pace might be possible. For someone with severe ME it would be totally impossible, they might only just make it from the bed to the sofa. 

And then because of the fluctuating nature of ME , the mildly affected person, having done the walk yesterday might not be able to walk so far today, if at all.

It would take me many paragraphs to really describe the nature of PEM and activity in ME. It is certainly complex.

The other thing that the person living with ME has to learn is that EVERY SINGLE ACTIVITY uses energy, from watching TV or reading a book to driving the car or walking the dog. 

I took a long time to really learn that sitting down with a cuppa, TV on and iPad in hand for a rest, was anything but!!

Yes I might be physically resting by sitting down,  but I was still using my energy by watching TV, and by doing something as innocuous as reading my emails. 

Psychological activity can sometimes even be more energy draining than the physical activity. For example watching a disaster unfold on the news, or reading something distressing in an email such as news or a death or other serious event.

Everything has to be considered and taken into account. Which is why an afternoon rest, physically lying on the bed in silence (and often actually sleeping) is beneficial.

The more one practices pacing the better it gets, and you work out what helps your body. 

The other good thing about pacing is that it can be flexible. For example if there is a busy day coming up, quieter days can be planned either side in order to help mitigate the PEM and maintain the equilibrium.

It’s also important to be flexible, because sometimes life doesn’t go to plan. For example an appointment might overrun or be late starting. You can find something takes more energy than you thought, or you make a decision to stay longer than planned because you know that you can rest more tomorrow.

Having such flexibility means that normal life doesn’t necessarily pass you by. And this is how I have found the aforementioned afternoon nap works for me. I prefer to do something that takes more energy in the morning, for example an appointment, meeting a friend for coffee or visiting a shop. My car and my blue badge means that I can park closer to where I am going and save energy that would be spent walking from the car to where I want to go. 

When I was first diagnosed with ME I missed out on a lot of things, because I would do too much and then crash, often spending days bed bound and house bound. I felt that I would never travel again to visit family and friends or take a holiday.

Now, using pacing I have learned to understand my body and how ME affects it, and so I can plan to do something that involves travel. 

I must add here that I still get things wrong and the pacing journey is not smooth. Dealing with the unexpected is still the biggest challenge, from getting bad news or a normal health issue such as a cold or sprained ankle can upset the best laid plans. At these times I have learned to go with the flow and listen to my body.

Payback of PEM usually occurs for me 24/48 hours after the event.

It’s never an exact science but having understanding family and friends really helps.

Obviously there is a lot more to pacing than described here, but I hope that it gives you a sense of how I live my life with ME.