May is M.E./CFS Awareness Month and I had been planning to write at least one but hopefully three blog posts as well as many Instagram posts.
However, ironically I have been too fatigued to do so.
I have been sat here for at least a week trying to give you the facts and figures to raise awareness for M.E./CFS. Although facts and figures are important and they can share a certain amount of information with you, what they can’t do is tell you what living with M.E./CFS is really like, they don’t tell you how it actually affects peoples lives.
So please excuse my foggy brain as I try to construct this post.
What is M.E./CFS?
Simply put M.E/CFS also know as Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome is a fluctuating neurological condition. Symptoms affect many of the body systems including the nervous system and the immune system. It causes chronic fatigue and chronic pain as well as many other symptoms.
Is M.E./CFS a Rare Condition?
No, it is estimated that M.E/CFS affects 250,000 people in the UK and around 17 million people worldwide.
Like many conditions M.E./CFS affects more women than men however, both men and women of all ages can have this condition.
How is M.E./CFS Caused?
The exact cause of M.E./CFS is still unknown however, evidence does suggest that there is likely to be a number of factors involved including genes, environmental factors, viruses, physical trauma, other illness and possibly some treatments for other conditions.
Why Do You Keep Referring to the Condition as M.E./CFS?
It is now thought that there may be several different severities and sub-groups of M.E./CFS. These are the two terms I know of and I believe are currently being used. Some patients are diagnosed with M.E. (Myalgic Encephalomyelitis) some are diagnosed with CFS (Chronic Fatigue Syndrome) and others are diagnosed with M.E./CFS.
The truth is we don’t really know what the difference is and most doctors cannot answer that either. However, some believe M.E. to be the umbrella term with CFS being a sub-group and less severe.
The NICE Guidelines also categorise M.E./CFS into Severe, Moderate and Mild.
This being said do not allow these terms or someone else’s opinion to invalidate the way you feel and the severity of your illness. Chronic Illness is not a competition.
How is M.E./CFS Diagnosed?
Currently there is no specific test to diagnose M.E./CFS. However, through a lot of research they believe they have come close to finding a blood test to help diagnose M.E./CFS but we are still a while away from this yet. There is hope though that one day they will be able to diagnose M.E./CFS more easily.
Diagnosis is currently made through the process of elimination. This sadly does mean it can take years for patients to be diagnosed. It does also frequently mean that some people are misdiagnosed with a different condition before being diagnosed with M.E./CFS.
Due to the number of conditions which are diagnosed this way and a wide spectrum of symptoms which over lap with other conditions it also means that you may be diagnosed with M.E./CFS rather than a different condition you may have or you may be diagnosed with M.E./CFS before they accurately diagnose you.
Unfortunately there is a lot of issues with the process of elimination which is why we need more research and funding put into finding a diagnosis marker.
What are the Treatments for M.E./CFS and is it Curable?
If you hadn’t guess already I’m not exactly one to give straight answers… essentially no. Some people do ‘recover’ from M.E./CFS however, what this tends to mean is they live better than they once did and to a certain standard. What is this standard you ask? I have no idea.
Some patients with M.E./CFS have a bad few years and with some support find themselves doing better than they were. They may feel better able to get out of bed each day to reach the sofa, perhaps they feel ready to tackle some online study or work from home or perhaps they are seemingly functioning as you would expect the average person, emphasis on seemingly.
This being said even if you ‘recover’ from M.E./CFS you will still have good days and bad days. You will likely never quite be at the same level of someone else your age, you may never feel the person you once were but it is possible to improve for some patients. There is also no guarantee that you won’t deteriorate again.
This can also work in reverse where some patients may find they deteriorate over time.
The current ‘treatments’ for M.E./CFS, also outlined in the NICE Guidelines are Graded Exercise and CBT (Cognitive Behavioural Therapy).
If you know me you know that my opinions on CBT (to put it politely) are not good. However, some people find CBT extremely useful and it can really work for them. In my opinion it also depends on the person you are working with as many interpret CBT differently.
In summary they believe through gentle exercise that builds up over time and positive thinking can help improve symptoms/ help you manage and process your symptoms.
This method can and does help some patients.
HOWEVER, and this is a BIG however if you couldn’t tell already. Graded Exercise and CBT does not work for a majority of patients and can increase symptoms for some patients rather than decrease them.
Yes, exercise is good for you but forcing patients with M.E./CFS to exercise impacts everything from fatigue, pain, thinking clearly, being able to move. The impact doesn’t just last those few minutes, that day but their week and can often lead to a ‘crash’ (a crash is a term often used by those with chronic illness to describe a period of time where they feel worse and their symptoms are worsen for a period of time which can last days to months).
There is also currently a lot of discussion surrounding these methods as parents of mainly younger children with M.E./CFS are struggling with what’s best for their child. Doctors/Physio’s/Medical Professionals/NICE Guidelines tell them that these approaches are best. However, their children are getting sicker and are a long way from who they were when they started ‘treatment’. Some parents have made the difficult decision to stop their child’s ‘treatment’ and in some cases have faced serious consequences where their child has been taken away from them as it has been seen as not properly caring for a child.
I find that extremely difficult to write and I couldn’t believe it when I first heard of it.
My experience with Graded Exercise was brief. 9 years ago when I started Graded Exercise I was asked to start by just sitting on an exercise ball for ‘x’ amount of minutes each day, keeping myself balanced and in good posture. I never passed this point of exercise as my pain levels were too severe to do so. The amazing and one of the best Chronic Fatigue Programs I was under said that we couldn’t continue with this course of ‘treatment’ until my pain was better under control. Unfortunately due to my other health conditions and my CFS it was never the case. As a child I did attend a lot of physiotherapy and hydrotherapy. I do now and I even had a period of my life where I could attend the gym at least once a week. None of these however, have ever cured my CFS.
A cure for M.E./CFS is a long way off. There are many things that patients can do though to try to support their bodies, to help feel better within themselves both physically and mentally. There are many things they can do to try to help symptoms. However, nothing anyone does will cure them. It doesn’t matter how many miracle exercise programs or diets they try it won’t cure them but it might help improve their symptoms depending on what they are.
How Do Severely Affected Patients Receive Treatment?
As I have said treatment can be extremely difficult and a lot of patients do not respond well to treatment that you are simply just left to deal with it on your own. This means so many patients are left without any medical input and can often go on too long without any support.
In severe cases of M.E./CFS some patients are unable to leave their beds, house or are unable to travel to a hospital whether its 5 minutes away or 90 minutes away.
When this happens a very small amount of patients may be offered a phone call consultation or a video call consultation via Skype. However, many doctors will not do this or they won’t until they have seen you in person for an initial consultation.
This therefore means that patients more severely affected by M.E./CFS cannot access any treatment what so ever. There is nobody medically available to them to offer treatment or support both physically and mentally.
Far too many patients are left alone with this condition because doctors simply do not know what to do for M.E./CFS patients.
It is ridiculous that those most severely affected are not offered any support. In many cases when patients say they are physically unable to go to an appointment they are marked down as unwilling or difficult. This leaves that patient with a note that everyone can see and other medical professionals may then dismiss them as they are seen to not be helping themselves which is absolutely not the case!
Mild, Moderate and Severe, How are Patients Affected with M.E./CFS?
As I previously mentioned NICE Guidelines categorise patients into these three categories. Doing this does not change a person’s diagnosis it doesn’t change how they feel or how their condition affects them it is just a way for them to understand where a patient lays in their diagnosis.
From my personal experience I have never had to deal with these categories. It is not a term my doctors have ever really used. It is not a way I have ever been asked to describe my condition.
Although when it comes to M.E./CFS there is a lot surrounding the NICE Guidelines I disagree with, these categories show that every patient is affected differently.
I’m not going to go into details on these categories but I do want to talk about the different ways someone may be affected by M.E./CFS.
Some patients are not able to get out of bed at all, some patients are able to get out of bed to a different area of the house, some patients can get out of bed with limited problems. Some patients can do these things on some days but not others.
Some patients may need the use of a wheelchair, a walking aid, supports others may not need any support. Some may need support on some days but not others. Some may need support for two hours but not one hour.
You see where I’m going here?
Some patients had to give up education or work, some had to cut back, some learn or work from home others are still in full time education or work with great difficulty. Either way they may be heavily reducing their capabilities in other areas of life to manage that one thing and some patients have lost a small to severe amount of quality of life.
As many expect some patients with M.E./CFS sleep A LOT however, others can hardly sleep.
Hi I’m Holly I’ve been a diagnosed insomniac since I was a small child. I am exhausted and fatigued 90% of the time however, I find sleeping extremely difficult.
What Stigmas and Misconceptions are associated with M.E./CFS?
Where do I begin!
There is a lot of stigma and misconceptions surrounding M.E./CFS. I wanted to go through them not just to tell you how wrong they are but to share the impact these stigmas and misconceptions negatively impact patients lives.
Firstly, M.E./CFS is not a real condition. WRONG. Many people don’t believe in M.E./CFS which may I say is utterly ridiculous! However, many patients myself included have not just heard this from others i.e. strangers, family, friends but also medical professionals, doctors and probably the most frequently our GP’s!
M.E./CFS is a VERY REAL condition which affects all of the body’s systems including the nervous system and the immune system. It affects all aspects of patients lives, which I will go into more in the next section.
When a medical professional doesn’t believe in the condition patients often are unable to receive treatment or any support. They are told ‘it’s all in your head’, ‘you are making yourself ill’. If you are told this enough times by a Doctor you will eventually start questioning yourself! It is a dreadful place to be in. You begin to push yourself, you start to beat yourself up internally for not being better, for not trying hard enough and eventually you end up with a severely deep hatred of yourself. Then you become sicker because you have pushed your body to a point where it cannot cope anymore. You eventually begin to realise that you knew best. You are sick. There is something wrong and you need someone to see that and help you.
It is common for friends or family members of M.E./CFS patients to not believe in the condition this is only made worse when your doctor doesn’t either.
‘It’s all in your head’ something we hear from doctors far too often. M.E./CFS IS NOT a mental health condition. It is however, a VERY REAL and DEBILITATING health condition. There is even evidence to support this condition yet many still do not believe in the condition. There are some doctors that are still pushing for M.E./CFS to be recognised as a Mental Health problem which it is not. Despite some of current research and breakthroughs it is still an extremely scary time to be a M.E./CFS patient and even more so in particular countries where certain doctors have far too much power and influence.
‘Ugh, M.E./CFS is just being tired, I’m tired too. Deal with it.’ M.E./CFS is FAR more than just being tired. It is feeling like you have run a marathon every second of every single day.
You are absorbed by this cloudy bubble of fatigue where even breathing is exhausting. It is the worlds worst hang over, the worst flu you’ve ever had mixed with having run a marathon. Your body aches, everything feels very surreal you can’t focus or concentrate. You don’t really know what’s going on around you. You just keep doing whatever you are doing in hopes that it’s the right thing. You can’t think clearly. Everything is too loud, the lights are too bright and smells are too intense. It is walking around in the dark with no light insight.
Fatigue is extreme, Chronic Fatigue is constant. You may me ‘absolutely exhausted’ after a hard day at work and I can imagine you are however, you will have a cuppa, put your feet up, enjoy a meal and sleep. You may not particularly like mornings but you will wake up refreshed having felt like you slept and you can go on with your day. M.E./CFS patients may only sleep for a few hours. Other patients may sleep for 8-12 hours plus and they will wake up feeling as exhausted as they were before they went to bed if not worse than when they slept. An abled person can escape their tired. M.E./CFS patients cannot. It is constant, it is extreme and it is far more than being ‘just tired’.
‘You just need to go to bed earlier, eat lots of fruit, vegetables, superfoods, meditate and hydrate and you will feel completely refreshed and you will be cured’. Um… no Susan it doesn’t work like that. Going to bed earlier can in fact keep some people up for longer. It also doesn’t matter how much sleep we have we are never refreshed. A change in diet can be good for some people, it can help with other symptoms a person may have however, eating healthily will not cure us. Meditation may work for some as a way to relax, settle the mind but again we cannot think away our condition. If the medical profession have not yet found a cause, a treatment or a cure yet then I can guarantee vegetables, meditation and spices will not cure me.
What are the Symptoms of M.E./CFS?
These are just some of the symptoms that come with having M.E./CFS. Some patients will also have co-morbidities of the condition. For example, Postural Orthostatic Tachycardia Syndrome (aka POTS) which causes abnormal increase in heart rate that occurs after sitting up or standing. It typically causes dizziness, fainting and other symptoms. As I said patients may have a number of other conditions too.
M.E./CFS is a physical neurological condition which affects many of the body systems. It is a cruel, debilitating condition with very little understanding. Diagnosis can often take years and can be misdiagnosed many a times.
M.E./CFS patients are all affected differently and there are many severities of the condition. Some patients can walk unaided, some with great difficulty, others with walking aids and some patients may use a wheelchair intermittently or all the time.
This condition leaves many patients house bound or bed bound. However, it is not the case for all patients.
M.E./CFS is poorly understood, receives very little funding for research and the cause of the condition is still largely unknown and there is no cure.
M.E./CFS, those with the condition and the families it affects deserve far better then we have, far more understanding and a lot more respect.
M.E./CFS has taken the fast paced, fun filled, exciting lives of millions of people and left them unable to do even the smallest of activity without severe consequence.
We deserve better because we are the millions missing in society.