ME: Invisible, Inexplicable, Inescapable

 ME (myalgic encephalomyelitis, also known as CFS – Chronic Fatigue Syndrome) is a debilitating, multi system disease that has a prevalence rate of 0.2-0.4%. This equates to as many as 250,000 people affected in the UK alone. It affects all ages, socio-economic backgrounds and sexes, though it predominantly affects women. It is underfunded, poorly understood and many sufferers face stigma and disbelief. Symptoms include extreme fatigue, worsening of symptoms following physical or mental exertion, unrefreshing sleep, flu-like symptoms, brain fog, and many more. Quality of life is significantly impacted and many are left unable to work, housebound, and even bedbound. 

 

Invisible:

People with ME (PWME) often appear healthy on the outside. They can have rosy cheeks, no physical disfigurements, and look generally like a normal healthy person, albeit looking maybe a bit tired - but who isn’t these days!? It often affects young people, I personally got sick at 24, and people don’t expect health issues in younger people unless there are very obvious physical signs.

 

ME is not always invisible to those close to the person. It can be seen in the times when they struggle to get out of bed, when getting up off the sofa seems impossible, when they are unusually clumsy, when they’re so tired they lose their balance and fall, when they struggle to speak even a few words, when they seem distracted and unable to concentrate on what’s going on around them, as well as a multitude of other signs visible to those who know the person well. 

 

For some there are more outward physical signs, such as those who need to use wheelchairs and other aids, but many don’t need these all the time so can appear fine. This can be particularly tricky for PWME who are ambulatory wheelchair users, as they can face judgment when they get out of their wheelchair, or if they use a mobility scooter. 

 

It’s important to remember that even if someone with ME looks fine on the outside, it’s impossible to know how they’re feeling on the inside. I often have well-meaning people say to me “You’re looking well”, and I find this quite upsetting, as often I don’t feel well when I’m told this, and it makes me feel misunderstood and disbelieved.

 

Inexplicable:

Much about ME is still unknown, predominantly due to a systemic lack of funding and a history of bad research for the condition: such as the PACE trial which manipulated benchmarks and recommended a treatment that can actually cause harm, or the royal free disease outbreak where many were left chronically ill after an infection (similar to long covid) but it was deemed a case of mass hysteria. 

 

However, whilst we still cannot really explain what ME is and how it’s caused, recently some great work has been happening recently and we have been finding pieces of the puzzle that start the journey to understanding. ME Association publishes regular updates on the latest research if you would like to keep up to date with it and see what’s been going on. 

 

Inescapable:

For years, ME patients have suffered dismissal, a lack of care and support, disbelief, and even harmful treatments (such as Graded Exercise Therapy, with thanks to the PACE trial). When people get sick with ME they generally find it’s up to them to try and find ways to feel better; the NHS has very little to offer and can leave PWME feeling neglected, or worse, like a bother or hypochondriac. 

 

In my own personal journey from getting sick, I began seeing medical professionals feeling full of hope and confident they would help me get better. As time went on I experienced more and more disappointment, and even some hurtful comments. 

 

The first specialist I saw was an ENT and his suggestion was that I played tennis to get better. When I explained that I was struggling to walk even short distances and was so tired I had to spend all day on the sofa, he ran out of ideas and assured me I’d be better in a year. 5 1/2 years later and I’m actually worse than I was when I saw him.

 

Next I saw a neurologist who said to me “if you think about your symptoms less then you might feel them less” in response to me preparing a list of symptoms ahead of our appointment to try and be helpful. He then proceeded to suggest therapy as a solution.

 

I then saw a rheumatologist who at the time was a refreshing break from the other specialist I had seen. He made me feel believed, and he was the first to suggest ME, though by that time I was fairly sure that’s what I had. He even offered a treatment plan that seemed hopeful. He prescribed me a drug called amitriptyline that he said could potentially help with my pain and give me more energy (it didn’t, instead it just turned me into a zombie for a few years), suggested therapy (by this point I was feeling resigned to the idea) and also Graded Exercise Therapy (at the time I wasn’t aware of the issues surrounding GET). Ultimately none of his advice was helpful, but it was just so refreshing to be treated with belief and a plan to go forward. Until then I was just being passed around with no solutions, only more tests. 

 

Next I saw a Psychiatrist with a view to getting CBT (cognitive behavioural therapy) on the back of my rheumatologist appointment. However, the psychiatrist was keen to diagnose depression, despite the fact that I wasn’t depressed, and any bad feelings I was having were as a result of being ill. She encouraged me to take anti-depressants because they might “make you feel like you have more energy”, but with ME the issue is that there simply isn’t the energy there, and exceeding your amount of energy can be harmful. After a discussion with my GP we decided not to put me onto antidepressants.

 

It was at this point that I found out that my private health insurance (I had as a work benefit) wouldn’t cover ME/CFS and therefore I couldn’t seek any further help from them. I remember crying when I found that out because it made me feel abandoned and helpless.

 

My GP made a referral for me to the Bristol ME/CFS clinic and 10 months after I fell ill, I finally had my first appointment. I was so excited and optimistic to finally be going to the right place. It was good to finally get an official diagnosis, to be able to give a name for what was happening to me even though I quickly found out the prognosis wasn’t good. The clinic made me feel supported and believed, and they helped me to understand pacing, and to realise I’d been pushing myself too hard ever since I got sick. Ultimately though, they couldn’t offer anything other than support to manage day to day, and nothing helped me to actually get better. The help they could offer was limited when I became too sick to attend sessions at the hospital. I received telephone counselling which helped me through a difficult time in my life, but eventually the support fizzled up. They had a limit to how many therapy sessions you could have, and the other support was face-to-face group sessions, which I was unable to attend. It was disappointing to not have my hopes realised, and it made me see that the NHS and traditional medicine would not be able to help me. 

 

Throughout this time my GP did try her best to help, but there was very little she could do. I had some trouble early on in my diagnosis when she suggested my problems were because of anxiety, but she did genuinely want to help. However, all she could really do was write referrals, prescriptions, and sick notes. After some time she left the practice and with her leaving I lost my supportive GP, something that is important when you suffer from a chronic condition. I tried several different GPs after that but just felt like they didn’t really believe my condition was physical and were generally unsupportive. Recently I have moved and am now with a new GP surgery and have found the GPs here more supportive, but I’ve not been able to build a relationship like the one I shared with the GP who helped me at the beginning. Going through that journey together created a bond that can’t be replicated. 

 

Some of my symptoms are problems with my heart, blood pressure, and orthostatic intolerance. I became aware of a condition called POTS (postural tachycardia syndrome) and it seemed to explain some of the issues I was having. I ordered a blood pressure monitor and carried out some home tests, which indicated this was something I suffered from. I spoke to my doctors about this and whilst they happily ordered me ECGs and 24-hour blood pressure monitors, these tests didn’t show anything abnormal (which would be expected as they don’t account for the cause of changes in these metrics). What I really needed for diagnosis was a tilt table test, but the doctor simply said that it’s common for women to have low blood pressure and wouldn’t take the request further. I didn’t have the energy to fight on this and the problem is unresolved to this day. 

 

Following my move, I requested a referral to the ME clinic in my new area. I had to wait many months before I managed to get an appointment, and as these types of clinics are few and far between, I have to travel an hour each way to get there – something that takes a toll on me. However this clinic was not like the supportive clinic I’d experienced in Bristol. All they were interested in was what tests they could run or what pills they could prescribe. The doctor I saw in my first appointment said to me “it’s all in your head… but also not” and at that point I immediately lost all confidence in the clinic’s ability to help me. He also admitted that they could run some tests but there was basically nothing they could do.

 

Following my early disappointments with conventional healthcare, I began to explore alternative therapies. I have tried several different things over the years, and while some offered slight improvement, the benefits haven’t lasted, and the cost of trying different therapies has been prohibitive. It is hard to decide whether to spend limited funds and energy on treatments when you have only had disappointment in the past. 

 

I consider myself relatively fortunate with my medical experiences. I’m aware that some people take years to get an initial diagnosis, and some are forced into harmful treatments, or even sectioned under the assumption their condition is psychological. The only way to improve the care of ME patients is to improve funding to obtain better treatments, and to educate care providers so PWME are believed and given the care they need. 

 

Some people with ME do get better, and maybe even fully recover, however many others do not. It is a tough sentence to face: not knowing if it will be 1 year, 5 years, 10 years, or the rest of your life. The only way I’ve found to deal with it is to try to find things to be grateful for in the way my life is now, but maintaining hope that I will improve in the future. It’s not always an easy task, but it’s much better than trying to fight my reality.