10 things I wish people knew about ME/CFS

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a serious, chronic illness that affects multiple parts of the body and severely limits the life of those who suffer from it. It is estimated that it affects around 250,000 people in the UK and between 17-24 million people worldwide. However these are only estimates, and have not changed since the pandemic began in 2020. Given that multiple studies have suggested that around 50% of people with Long Covid meet the diagnostic criteria for ME/CFS this number has to have risen steeply over the past 3 years.

And yet so little is still known about ME/CFS, both within the medical community and society at large. Many people still seem to think that it is “just feeling a bit tired” and do not take the risk associated with Covid infection and persistent, life-changing symptoms seriously. Which is why I decided to write this post. As someone who first fell ill with ME/CFS in 2015 I’ve had several years to get to know the condition and many of its sufferers well. And this is what I wish people knew about it.

It is so much more than fatigue

The name “Chronic Fatigue Syndrome” is a misnomer, as it suggests that this condition is purely about fatigue. This is not true at all, there are many different symptoms that occur in patients with ME/CFS. Unfortunately, due to the stigma surrounding this condition, which we’ll get into in the next section, this name has been used widely for many, many years, and is still often the diagnosis people are given. It is what I was given back in 2016 when I was diagnosed with it after months of tests and doctor visits.

Many people prefer the name Myalgic Encephalomyelitis (even if it is a struggle to remember how to spell that with brain fog), because it is much more accurate. Myalgic refers to pain in the muscles, ligaments, fascia, and other parts of the body. Encephalomyelitis refers to inflammation of the brain. The World Health Organisation (WHO) has classified ME/CFS as a neurological condition since 1969. As such it is easy to see how ME/CFS is so much more than fatigue.

That being said, fatigue is a major symptom in ME/CFS, and one of the hallmark symptoms of the condition is Post-Exertional Malaise (PEM), which can also be called Post-Exertional Symptom Exacerbation (PESE). PEM/PESE is when physical, cognitive, or emotional activities cause a worsening of symptoms. PEM/PESE can occur immediately, but it is often delayed by 24-72 hours. And it can last for days, weeks, or even months. This has, as you might imagine, a significant effect on ME/CFS patients’ ability to life a “normal” life.

The easiest way I can describe what ME/CFS is like is if you think about how you’ve felt if you ever had the flu. And I’m not talking about a bad cold, I mean full on flu where lights and sounds hurt your eyes, you flip between shivering with cold and burning up, your limbs feel like they’re made of lead, you can’t tolerate any food, and you just want to sleep but can’t because your head hurts too much. That’s what ME/CFS is like. Except you never get better.

Which brings me back to the point that ME/CFS is so much more than fatigue. When you have the flu you don’t just feel a bit tired, do you? You have a wide range of symptoms. The same is true for ME/CFS. Below is a list of just some of the most commonly reported symptoms experienced by people with ME/CFS. Please note, this list is not exhaustive.

• flu-like symptoms
• recurrent sore throat
• headache or migraine
• nerve pain, tingling, or numbness
• muscle aches and pain, including cramps and spasms
• painful joints
• abdominal pain
• chest pain
• back pain
• orthostatic intolerance
• dizziness, particularly when upright
• poor temperature control
• poor circulation
• loss of balance
• hypersensitivity to light, sound, movement etc
• nausea
• loss of appetite
• indigestion and reflux
• allergies and intolerances to foods, medications, chemicals etc

As you can see, the list of symptoms is long and varied and affects every part of the body. It is so much more than fatigue.

It is NOT psychological

This is a really important thing to note, because so much harm has been caused to the ME/CFS community by a select few, overly powerful psychiatrists who wish to push the narrative that ME/CFS is a psychological condition. Proponents of what is known as the biopsychosocial model of ME/CFS believe that it is caused by psychological issues such as “fear of exercise” and deconditioning. As such, they have pushed treatments which have massively damaged ME/CFS patients, as we will see below.

It is important to note that a lot of ME/CFS patients will experience psychological issues such as anxiety and depression because of the nature of their condition. Think about it, if your entire life was upended and you suddenly became unable to work and pay your bills, and had to rely on family or caregivers to help you do the most basic of tasks like cooking and even washing you, whilst you were stuck in bed, how would you feel?

But just because a lot of ME/CFS patients experience depression and/or anxiety, this is not the cause of their symptoms. We must never forget this, especially as the narrative from within the media, government, and medical community continues to be that we are simply malingerers. ME/CFS patients would give anything to be able to heal their bodies and return to a “normal” life. But treating their condition as psychological ignores the very real things happening in their body, usually across multiple systems.

There is a fantastic table at the end of this article which shows many of the clinical findings in patients of both ME/CFS and Long Covid which prove something is going terribly wrong in the bodies of people with these conditions. To continue labelling ME/CFS as a psychological condition is not only inaccurate it is bad science, and the psychiatrists trying to push this narrative need to be held accountable for the damage they have caused and continue to cause to patients.

ME/CFS patients have been damaged by “treatment”

So what is this damage that has been caused to patients by so-called treatment? Well, remember how we talked about PEM/PESE in patients with ME/CFS? Imagine then telling them that if only they changed their thinking and reconditioned their body they would be healed. Sounds absurd, right? But that’s exactly what happened to many ME/CFS patients, and is now happening to Long Covid patients too. And it’s all down to the undue power that some psychiatrists seem to have over the medical community, and a deeply flawed piece of research called the PACE Trial.

If there’s one thing I would like everyone to do, it’s to read up on the PACE Trial. But for the sake of this blog post, let me give you the details in a nutshell. The PACE Trial was the most expensive clinical trial carried out for ME/CFS ever, costing a whopping £5million and was carried out between 2005 and 2010. It was funded in part by the Department for Work and Pensions (DWP), which if you know how they treat disabled and chronically ill people should cause alarm bells.

The findings from it were first published in The Lancet in 2011, and massively influenced the NICE Guidelines, which are “evidence based recommendations for health and care in England”. This is how ME/CFS patients ended up being offered Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET) as treatment. Basically change your thinking and get moving. And sadly many, many patients who were subjected to this treatment saw a massive decline in their health, often never recovering to their previous baseline.

It took many years and a lot of effort from some of the sickest people to bring to light how flawed the PACE Trial was. Patient selection used criteria that was too broad. The main outcome was changed part way through the trial. And the threshold for “normal” was so low that patients could have worsened since joining the trial and still have been marked as “recovered”.

Letters have been sent to The Lancet voicing concerns, however as yet no response has been made. And it took years to get CBT and GET removed from the NICE Guidelines. Even after a long and exhaustive process of reconsideration by NICE, the biosychosocial proponents managed to delay the change, and said change has not yet been reflected in treatment for people with Long Covid, many of whom meet the criteria for ME/CFS, remember.

In 2018 SNP MP Carol Monaghan said, “when the full details of the trial become known, it will be considered one of the biggest medical scandals of the 21st century.” This scandal is ongoing in the continued poor understanding of ME/CFS, lack of funding for further research, and the ongoing power of psychiatrists such as Simon Wessely who was recently appointed to the board of NHS England.

There is no cure

As I already stated, the PACE Trial was the most highly funded clinical trial ever for ME/CFS. In a report published in 2016 on ME/CFS Research Funding it was noted that, “Despite the disease burden, the level of research spend per ME/CFS patient is considerably lower than in other illnesses. MS, for example, receives approximately 20 times more funding worldwide despite being far less prevalent than ME/CFS.” (page 15). As such, progress has been slow, and there is no known cure for ME/CFS.

Indeed there are very few treatment options available for ME/CFS patients. Treatment generally consists of trying to manage individual symptoms as best as possible, but this is often extremely limited and ineffective, leaving patients feeling forgotten about.

We are lucky that there are organisations like the Open Medicine Foundation (OMF) and new studies like DecodeME that are working hard to try and make progress in understanding ME/CFS better in the hope of figuring out better treatment options. But this is counteracted by large scale studies of Long Covid repeating things already proven ineffective in ME/CFS, such as the NIH RECOVER program looking into exercise trials.

We’ve already talked about a large overlap between ME/CFS and Long Covid, so to see this happening when it could have been a great opportunity to work together to make more progress is extremely disheartening.

ME/CFS may be an umbrella term that covers multiple different things

Whilst ME/CFS is most often understood to be a post-viral illness, that is one which was initially triggered by a virus, this isn’t true for everyone. Some people develop it following surgery, or periods of intensity in life, or trauma. Others may not even be able to pinpoint exactly what triggered their symptoms. As such, it is important to remember that whilst we all share the same types of symptoms, there could very easily be different things happening in the body.

This means that if a biomarker is ever found for ME/CFS, it must not be used to dismiss those with negative test results but all the symptoms of ME/CFS. And if a treatment is ever developed, it is unlikely to work for every single patient. Because if it targets viral persistence, for instance, that isn’t going to help someone whose ME/CFS was triggered by a non-viral event.

Even within those with a viral trigger, the specific virus will be different for different people. This is a really important this to remember about Long Covid too. Many people wish to keep Long Covid separate from ME/CFS, as if Long Covid is the only unique virus and everyone else’s ME/CFS was triggered by the same virus. This is highly unlikely to be true, and keeping the two separate holds back progress. Yes, we may find that treating the specific virus that first triggered ME/CFS is a key part of treatment. But that will be true for everyone, not just those with Long Covid.

Another challenging aspect of ME/CFS, both on the individual patient level and on the larger research level, is that there are several other conditions that often go alongside ME/CFS. Things like Postural Tachycardia Syndrome (PoTS), Chronic Migraine, Mast Cell Activation Syndrome (MCAS), and many others can often occur alongside ME/CFS. Understanding where one thing starts and another ends, as well as the links between these, could be crucial in making progress in understanding ME/CFS.

There is a wide range of severities

This is a really important thing to remember about ME/CFS – it ranges from mild to very severe, with each degree of severity having a fair bit of variation within it too. So you cannot look at one person with ME/CFS and assume that their experience is the same as everyone else with ME/CFS.

Many people also find that their level of severity fluctuates, with both improvements and relapses being common. Some people get incredibly sick incredibly quickly and never really improve. Others may be incredibly debilitated from the beginning but gradually improve to a higher level of functioning. Some may only have mild symptoms to begin with and then get worse over time. It really is hard to say where anyone will be on the scale, and it can also change at any time.

My own experience was a very mild start for about the first year, with increasing severity and debility for about 2 more years, then I seemed to stabilise at a moderate level. But a bout of the flu caused me to have a severe relapse into moderate-severe territory for about a year, before gradually returning to my moderate baseline. And then I had another relapse this year, and I can’t even tell you exactly why (although I suspect it may have been a gradual decline followed by a sudden increase around Christmas from my Covid infection last June).

There are several different scales used to help patients with ME/CFS gauge their severity. I have recently been using this one from Action for ME which puts me at 30% severely affected at present. However it must be noted that my cognitive level is much higher than my physical level, so you have to use these guides to find out which best describes you overall.

Every person with ME/CFS is different

Not only does our initial trigger and severity differ from others, so too does the things which we can and can’t do. For instance, I know many ME/CFS patients who are unable to concentrate on reading at all. I know others who are writers. I fall somewhere inbetween, being able to read but often only via audiobook and only stories I already know because focusing on a new storyline and characters is too much effort.

The same is true for physical activities as well. Some people can do basic housework, but certain tasks are more likely to trigger PEM/PESE than others – e.g. they might be able to prepare a small meal, but doing the laundry uses too much energy. Others are completely unable to do any of these these things, either because they do not have the energy to begin with or it causes a massive flare in symptoms.

I know patients who are completely bedbound, some who can get out and about with a wheelchair, some who can use a walking aid, and others who can drive. We’re all different, and we may also differ on what we can or can’t do on any given day.

If you know someone with ME/CFS, read up on the condition as much as possible by all means – it saves us having to find the energy to explain all of these basic principles to you. But always remember that every single one of us is different, and if you want to help us then it’s best to find out from us individually what we can and can’t do.

Pacing is crucial, but not always possible

Pacing is a key strategy in managing ME/CFS. It helps us to learn our individual “energy envelope”, that which we can do without triggering PEM/PESE, and try to stay within it. This limits the fluctuations in our symptoms and can help us to stabilise at a certain level of severity.

Pacing can look like only doing one big thing per day/week/month. And that big thing can be as big as a trip out or as small as getting out of bed or having a wash. It might be having a desire to read a book but only reading 1-2 chapters at a time. Or planning to see friends, but only spending 30-60 minutes with company before resting. It could be getting out in the garden and deadheading 5 plants. Or wrapping a gift for a friend’s birthday one day and writing the card the next. It is different for all of us.

That being said, pacing isn’t always possible. Many people have things that just cannot avoid. If you have kids or pets, they still need looking after. You have to try and eat. Medical appointments have to be attended. And bills have to be paid somehow, even if the stress of that comes from dealing with the DWP over benefits rather than trying to keep a job.

And then there are those who are in the very severe level of ME/CFS. Those who have to be tube fed and catheterised because simply sitting up to eat or pee causes a massive decline in health. Simply surviving for them pushes them outside of their energy envelope.

So whilst pacing is a key part of ME/CFS management, we must remember that it isn’t always possible, and that is never our fault.

It can happen to anyone

This is a really important thing for everyone to remember, ME/CFS can affect anyone at any time in their lives. Children get it. Teenagers get it. Adults get it. People of all genders get it. And it doesn’t matter what your life was like before, the outcome will be the same – massive debilitation.

Many people like to think that if you live a “healthy” lifestyle you’ll never get it. This could not be further from the truth. There are countless stories of people who were running marathons and competing at high levels before they got sick. Just because some of us already had health issues before the ME/CFS hit, doesn’t mean that’s why we got ill. You can no more prevent ME/CFS than you can stop breathing – if you’re going to get it, you’ll get it.

And nobody can predict who will get it, because we do not have any research that tells us who is more susceptible or why. All we know is that viruses are a major trigger for it, and we’re currently living in a mass disabling pandemic, so everybody should be doing all they can to avoid infection. Even if you’ve had Covid before and recovered fine, that doesn’t mean the same will be true for repeat infections. Just as many of us recovered from a multitude of viruses until the one we didn’t.

We need YOUR help

Which is why we need your help. We are incredibly poorly people. In fact studies have shown that the quality of life for people with ME/CFS is lower than that for Multiple Sclerosis, Cancer, Diabetes, and even HIV. Just getting through each day is hard, and yet we expend a huge amount of the energy we do not have in trying to raise awareness of ME/CFS, both to push for better support and to try and help others avoid the same fate (e.g. by taking Covid precautions).

So we need you to step up, to learn about ME/CFS and all the things I’ve talked about in this post, and speak out for us. The world needs to hear how debilitating this condition is, how much of a threat it poses to everyone, and how terrible our treatment is. And we need you to help us push for change. Because we need change desperately.

Finally, on a more personal note, if you have someone in your life with ME/CFS, please reach out and offer them practical help. What will help them most will differ from person to person, but it could be things like: taking their kids out for the day; helping with laundry or cooking them ready meals; assisting in filling out forms; going to medical appointments with them as an advocate; or even just sending them a text once in a while so that they know you haven’t forgotten about them.

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