Today, May 1st, marks the start of the awareness month for Fibromyalgia, Lyme disease and ME/CFS (Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome). Each May charities and those affected come together to put these illnesses in the spotlight. Although more people are becoming aware of the names Fibromyalgia, Lyme disease and ME/CFS, awareness is still important and very much needed.
Today, I thought I would share a few reasons why I feel we need an awareness month for Fibromyalgia, Lyme disease and ME/CFS.
1. There is still too much that remains unknown
What causes Fibromyalgia? Why do people suffer from ME/CFS? These are questions that no-one yet knows a solid answer to.
With Fibromyalgia and ME/CFS, many are met with “we can’t do anything more for you”. Beyond prescribing drugs to mask the symptoms and offering pain management, there is little help available from conventional medicine. Sometimes what is offered is even detrimental to the patient, such as the case of Graded Exercise Therapy (GET) and ME/CFS, which I will discuss further below.
Because so little is known, and no biological cause is yet to officially be accepted for Fibromyalgia and ME/CFS, many patients are left to feel like it is all in their heads if they fail conventional treatment. Even when someone has an understanding and compassionate doctor, they are often left to get on with things alone because there is nothing more that can be offered to help. This is unacceptable.
Chronic Lyme disease is not accepted by many medical professionals
In the case of Lyme disease, many medical professionals dispute the fact that Lyme disease can become a long-lasting, chronic condition. It is often wrongly assumed that a course of antibiotics is sufficient to cure all patients suffering from Lyme disease. This attitude is scandalous and means thousands and thousands of people are not getting access to appropriate treatment.
While a course of antibiotics may be sufficient in the early stages of illness if left untreated Lyme disease progresses and can become debilitating. If you are still sick after a short course of antibiotics (deemed sufficient to cure Lyme), many are told that their symptoms must be psychosomatic. It’s shameful. Though research is emerging to show the persistence of Lyme disease, more is needed to change this attitude and get patients access to the treatment they need.
2. There are still myths that are sadly believed
Lyme disease myths
As I mentioned above, the biggest myth with Lyme disease is that it is a straightforward bacterial infection cured with a short course of antibiotics. Unfortunately, testing is not reliable for Lyme disease (if patients are even tested at all) and positive cases are routinely missed. Better testing is greatly needed, but until the day that exists, a better understanding is a must.
The one symptom that gets too much emphasis
It is stated that the most common symptom of Lyme disease is the bull’s eye rash. However, at least a third (and potentially even more) do not get this rash. Many are wrongly led to believe that the absence of a rash rules out Lyme disease, leading to many missed cases.
Learn more about the myths surrounding Lyme disease
There are even more myths surrounding Lyme disease and a great book that addresses these is Unlocking Lyme: Myths, Truths and Practical Solutions for Chronic Lyme Disease. I would highly recommend this book if you want a better understanding of Lyme disease and how to treat it.
One of the biggest myths with ME/CFS is that cognitive behavioural therapy (CBT) and graded exercise therapy (GET) help patients to recover. These are the two therapies most commonly available through the NHS. Though CBT may be a useful tool in helping patients to come to terms with their limitations and struggles, many are left feeling like their thoughts and attitude is the reason they remain sick.
Why these therapies can be harmful
Unfortunately, CBT had been used in a way that suggests if patients change their mindset and tried to exercise they would get better. It has been used alongside GET to push patients to do more. And this has left a lot of people in a worse state than when they started because it completely ignores any biological basis for the illness.
If your body does not have the resources to do what you are asking of it, the results can be catastrophic.
One of the biggest myths surrounding Fibromyalgia is that it is a waste basket diagnosis. What hasn’t helped this is the fact that some people who have been diagnosed with fibromyalgia later learn that they were misdiagnosed. This leads many to dispute the diagnosis.
However, it’s been stated that a third of patients can be misdiagnosed with fibromyalgia. This isn’t proof that fibromyalgia doesn’t exist or that it is a nonsense diagnosis, but rather it shows that physicians haven’t been thorough in their testing. Fibromyalgia is a diagnosis of exclusion. Your doctor should consider all other possibilities before reaching a diagnosis of Fibromyalgia. Sometimes things are missed.
Fibromyalgia is very much a real condition and there is now a blood test available that should hopefully become more widespread in the future.
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3. Many do not understand the true impact of Fibromyalgia, Lyme disease and ME/CFS
Fibromyalgia, Lyme disease and ME/CFS can be life changing illnesses. I think this is hard for some to grasp as there is such a varying scale of illness. Near the top are those who have minimal symptoms and are able to maintain a somewhat normal life (though do not underestimate the struggles involved in this. It also has to be said that some may be putting up the appearances of living a normal life but in actual fact are struggling immensely).
The scale goes all the way on a sliding slope down to being bedbound and requiring constant care. These are the people you hardly ever see. They are far too sick. It’s hard to appreciate the severity of something you can’t see, the reason behind the striking #MillionsMissing campaign.
Ignorance to the severity of illness sadly exists
The fact that people do not see the worst of these illnesses (unless you live with the illness yourself or are close to someone who does) means there is a lot of ignorance that exists. If some people can manage to do x, y or z there is the perception from some that everyone should be able to this as well. This should attitude is very damaging.
Within the illness scale, there is a level of variability too. Symptoms can change daily and people can have ok days, worse days and better days. This variability makes it hard for people to understand. How can you be well enough to see someone for a coffee one day but not the next? Sally explains this perfectly in this post, which is definitely worth checking out.
The bottom line though is that Fibromyalgia, Lyme disease and ME/CFS impact every single aspect of someone’s life. The personal losses as huge (loss of the ability to work, loss of relationships and friendships, loss of hobbies and passions, loss of self… the list goes on).
4. We need change
No-one should be left to suffer. No-one should be made to feel like it is their fault they are ill. No-one should have to suffer the losses Fibromyalgia, Lyme & ME/CFS patients do on a daily basis. It is unacceptable.
We need the support to add pressure for more research to gain a better understanding of these illnesses. We need action. We need change. We need better treatment options. And this is ultimately why we need an awareness month for Fibromyalgia, Lyme disease & ME/CFS.
This post is just scratching the surface and there are even more reasons why we need to raise awareness of these illnesses. What are your thoughts? What reasons would you add? Let me know in the comments below.