How much do you know about CFS/ME?

So, how much do you know – or think you know – about CFS/ME?

And, why on earth is a blog like this appearing on a website about beading?

Well, let’s answer the first question… I’ve put together a little quiz so you can find out how much you actually know about CFS/ME…

How much do you know about CFS/ME?

Jot down your answers to the following questions to find out how much you know about this. You can look for your score at the bottom…but no cheating!

Question 1:

Is the following statement correct?

CFS/ME is a mental illness.

• A. Yes
• B. No
• C. I don’t know

Question 2:

Who can get CFS/ME?

• A. Anyone
• B. Women
• C. Men
• D. Young people
• E. Older people

Question 3:

What test can you take to find out if you have CFS/ME?

• A. A blood test
• B. A questionnaire
• C. A medical scan
• D. There is no test

Question 4:

What causes CFS/ME?

• A. Virus
• B. Bacterial infection
• C. Chemical poisoning
• D. Stress
• E. Don’t know
• F. Something else

Question 5:

Which of the following symptoms might you experience with CFS/ME?

• A. Fatigue
• B. Sore throat
• C. Headache
• D. Nausea
• E. Vomiting and/or diarrhea
• F. Night sweats
• G. Depression
• H. Brain fog – ie, inability to concentrate, loss of memory
• I. Changes in weight
• J. Painful limbs or joints
• K. Heart palpitations
• L. Panic attacks
• M. Swollen lymph glands
• N. Flu-like symptoms

That’s it! See, it wasn’t so hard was it?. You can get the answers below, so keep reading…

Why is a beading blog talking about CFS/ME?

Two simple answers. Firstly, I have been battling with CFS/ME for 15 years now and it is the reason I started beading. So, for me, beading and this illness are inextricably bound together.

Secondly, throughout November 2017, I am raising money for a campaign to fund a clinical trial into a treatment for CFS/ME. The clinical trial needs £50,000 in order to go ahead. I’ve set a target of £1,000. This seems like a drop in the ocean, but every little helps.

So, if you are the generous sort, please pop over now and give a donation. Aside from the warm fuzzy feeling you’ll get from helping someone (potentially millions of people, actually), you could also win a gift from me. Your donation gives you the chance to guess how many beads it took to make the little cupcake beaded box you see below. Whoever guesses closest to the right number will win the actual cupcake.

So, if you’re planning ahead and looking for a really unusual Christmas gift, or if you just want a bit of fun, this could be your answer. For anyone who doesn’t know much about beading, this cupcake took me about ten hours to make. The beads I used cost around £38 and they are all stitched together one at a time. So, there is nothing supporting the structure…this is just beads!

Right, back to my first question: how much do you know about CFS/ME?

What do we know about CFS/ME?

It amuses me that every press article I have read about CFS/ME over the past year or two has started in the same way. Something along the lines of: ‘Breaking news: CFS/ME is a physical illness.’

After 15 years of living with it, this is not breaking news to me. Yet, for decades, doctors have treated it as a mental illness. So, patients have regularly been told that they are imagining their symptoms. The recommended treatment has been Cognitive Behavioural Therapy (a form of psychiatric treatment) and Graded Exercise Therapy (basically working on the assumption that patients have become lazy and need to be pushed into some physical activity in order to recover). I’m going to come back and talk about treatment in my next blog.

Attitudes are slowly changing. So, while I may laugh at what looks like the ignorance of the journalists writing those opening lines each time, it is not the journalists who are ignorant. Rather, they are trying to break the ignorance that makes this illness so difficult to live with. I am eternally grateful to each one of them who does this.

Regrettably, it still remains the case that if I ask the average medical professional, ‘what do you know about CFS/ME?’, I’m going to get an answer that approximates to ‘not very much’. Although that is changing very slowly.

So, the observant among you will have noticed I just gave you the answer to question 1.

Who is affected by CFS/ME?

How much do you know about the answer to this? Basically, it can be anyone. In the UK, we are talking about 250,000 people – maybe more.

Of those, the proportion of women is slightly higher than men. The illness frequently hits people in their twenties. Although it can strike at any age.

Basically, there is no discernible pattern and that is one of the reasons it has been so hard to pinpoint the cause. Where do you start looking for something that seems so random?

So, while we’re talking about causes, you would have been right if you gave any answer to that question. Basically, we don’t really know. But for some people the start of the illness is linked to a virus or infection. For others it follows a stressful event. Some show chemical poisoning or an overload of toxins. In some cases, it is a combination of several of these factors.

Testing for CFS/ME

You might be expecting me to describe some sort of scientific test or process. In fact, there is no test at all.

As a patient, you go to the doctor, list your symptoms and he or she will probably do a blood test – maybe several. All of those will come back negative. So, you may then get into that conversation about being a hypochondriac. Or, if your doctor is more enlightened, if you continue to report your symptoms consistently for six months, you will be diagnosed with CFS/ME.

How much do you know about medical testing?

If you think that is actually evidence that this is a mental illness, then let me ask you this. How much do you know about blood tests?

‘Twenty Questions’

You might assume that a blood test is like saying to your body, ‘what is wrong with you?’ The test tells you the answer. In actual fact, blood tests are more like that game ‘twenty questions’.

So, the doctor listens to your list of symptoms, thinks back on all that training in medical school and compares your list to the various lists they have that belong to different diseases. For example, anyone reporting fatigue could be suffering from a whole range of conditions, from cancer to heart disease to kidney failure etc, etc. But if you look at fatigue with a sore throat, you might consider a throat infection, a virus, or a thyroid problem.

The doctor will think about the most likely causes of your symptoms and test for them. So, instead of saying ‘what is wrong with you, body?’, the blood test will be saying, ‘do you have elevated white blood cell count which could indicate cancer?’ Or, ‘what is your LFT – is there a problem with the liver?’

In actual fact, in this instance, the testing process hasn’t told you what is wrong with you, it has simply given a list of things that aren’t wrong. It’s a bit like me having the following conversation with you:

Me: ‘Do you drive a white car?

You: ‘No’

Me: ‘Do you drive a black car?’

You: ‘No’

Me: ‘Do you drive a red car?’

You: ‘No’

Me: ‘Right, then obviously you don’t drive at all. How do you find public transport these days?’

You: ‘That’s ridiculous! Of course I drive – I ride a motorcycle!’

The point is, medical testing relies on doctors asking the right questions. So, if they ask the wrong questions, or they simply don’t know what questions to ask, they’re not going to get a clear diagnosis. But that doesn’t mean the person is healthy.

Systems affected by CFS/ME

So, I’ve answered four of your questions now. This is a physical illness. It can affect anyone. We don’t know the cause and we don’t even have a test to diagnose it. Then, you could be forgiven for wondering if it exists at all.

In fact, this lack of knowledge is a reflection of the woeful lack of research. So, this is why it is so critical to get this clinical trial off the ground. If I’ve persuaded you of that, then please help by making a donation here.

There are private labs and individuals around the world who are carrying out research. They all struggle for funding, but they are finding snippets of information. So, we can now say with confidence that the following physical systems are affected. (I am about to give you a massively over-simplified picture here).

Central Nervous System

This is essentially the control centre for your body. It sends messages between organs, regulates hormone production and basically makes sure things are functioning as they should be. So, when it goes wrong, it’s pretty serious.

In CFS/ME it is malfunctioning. The body ends up stuck in a ‘stress’ state where adrenal glands are producing Cortisol and Adrenaline in the wrong proportions or at the wrong times. This is sending all sorts of crazy signals to other organs in the body and they all begin to work sub-optimally as a result.

Endocrine System

This is the system that regulates hormones. You might have heard of it in conjunction with the Thyroid. So, CFS/ME and thyroid problems are related. A lot of people who have a thyroid condition are mis-diagnosed with CFS/ME. Conversely, CFS/ME can cause thyroid problems. Now, thyroid problems can be treated. So, if your CFS/ME is actually a thyroid issue, you can spend years suffering unnecessarily. It’s worth checking out, but not easy. Borderline thyroid cases are problematic to detect. For more information about that, try Thyroid UK.

Digestive System

With a poorly functioning digestive system, you will struggle to absorb the nutrients from your food. Your body then quickly becomes depleted and things go wrong. Research on this is in its infancy, but this area is all about the ‘good’ and ‘bad’ bacteria that live in the digestive tract. We’re only just starting to uncover how critical they are for health in general and a lot of ‘mystery’ diseases in particular.

Immune System

With CFS/ME, the immune system is under-functioning. So, this can mean you pick up illnesses more easily. It can mean your body has trouble fighting off viruses and infections. It can also provoke an ‘auto-immune’ response. So, basically, the immune system starts attacking the body.

Mitochondria

Again, this research is in its infancy and scientists are only just beginning to appreciate the full importance of the Mitochondria. These are, in layman’s terms, the little batteries that reside in every cell in your body and provide the cells with the energy to do their job. So, if the Mitochondria don’t function properly, your cells don’t get the energy they need to function either.

I wrote a much more comprehensive blog about Mitochondria last year when I found out how badly blocked mine are. In essence, the easiest way to summarise this is by referring to the Duracell battery advert. I am ‘Zinc bunny’ (but without the double to take over when I collapse) and your average healthy person is ‘Duracell bunny’.

What this information means

At this stage, all this information is basically just observation. The research looking at all these areas has observed that some people with CFS/ME have problems in these areas while most healthy people don’t.

We don’t know whether any of these are the root cause of the illness or simply an effect. We also don’t even know if this is all one illness. It could be that this is actually several different illnesses that the medical profession has just dumped under one umbrella term because they don’t know what else to do with it.

You can find out a lot more detail, including proper scientific research and evidence from the following two websites:

www.drmyhill.co.uk

The Hummingbirds Foundation for ME

Your last answer

So, how much do you know about how that relates to the list of symptoms? Well, if you answered question five correctly, you should have ticked every single symptom on that list.

I have experienced them all. Some of them come and go. Some I have had without respite for years. Different people have different experiences. So, not everyone will have all those symptoms. Some people may have symptoms that I haven’t listed. Either way, it’s really no fun to deal with.

How did you score on the quiz?

If you’ve scrolled straight down here looking for your results, I’m afraid I’m going to disappoint you. To find out how much you know, you need to read the information above.

However, if you’ve read everything on the way to get here, then let me finish by asking you again, ‘how much do you know about CFS/ME now?’ What I’ve told you here is just the tip of the iceberg, but it’s a start.

So, what are you going to do with that information? It might come in handy in a pub quiz. Or you could share this blog and let some other people find out more about CFS/ME. Or, you could play your part in the campaign to really understand this illness and help all those who are suffering from it.

If you would like to do that then please stake your claim on my cupcake by clicking on the image below. This will take you to the donation page…and remember to include your guess at the number of beads in the comment box when you donate. Thank you!!

 

Read about the treatment options here >>