This is the second in my series of blog posts to raise awareness of CFS/ME. Since I am all about beading, it’s no coincidence that I want to link beads into this. So, what are healing beads, I hear you ask?
Is there even such a thing as healing beads? Well, let me start with a few facts and then I’ll come back to tell you about my healing beads at the end.
So, in my last blog, I encouraged you to discover how much you know about CFS/ME. If you haven’t already read it, then catch up here. Assuming you have read it, you will know that CFS/ME is a real physical illness about which we know very little.
It is blighting the lives of millions of people worldwide, yet very little research is being carried out and a lot of people still have big misconceptions about the illness.
Why you could call this a healing beads campaign!
This month, I am trying to raise £1,000 to help fund a clinical trial of a treatment for CFS/ME. And I’m using beads to do it. So, could these be healing beads?…Maybe!
I’m inviting people to make a donation to the campaign (by the way, the clinical trial will cost £50,000, so my little contribution is just a drop in the ocean). In return for your generosity and support, I invite you to guess how many beads it took me to make this little cupcake beaded box.
If it helps you at all, I can tell you that the materials (beads and thread) cost about £38. It took me around 10 hours to complete. I made it by stitching the beads together one at a time, using a technique called Peyote stitch.
After my fund-raiser has finished, at the end of November 2017, I will be sending this very special little cupcake box to the person who managed to get closest to guessing the correct number of beads.
So, if you’re short of time, just go ahead and help me out with a donation now… Click here to go to the fund-raising page and remember to leave your guess in the comments when you donate.
Now, let me persuade you…
I know we all get asked to donate to hundreds of charities. Much as we might want to help them all, it’s not possible. So, how do we decide which to help? Usually it’s because the cause has touched us in some way.
I fully appreciate that if you’ve never heard of CFS/ME, you’re probably not going to part with your cash to help me here. So, I see it as my responsibility this month to try and let you all know why this matters. Let’s see what I can do…
Current Treatments for CFS/ME
So, imagine, you’ve just been given a diagnosis of CFS/ME. You may be anywhere on the spectrum from completely bedbound and physically unable to move. Yes, I do mean unable to carry out even the most basic tasks like feeding yourself or washing or just cleaning your teeth.
Or, at the other end, you may be able to struggle through some semblance of a daily routine. Perhaps you are even working, but it takes all your energy to do this, so you have none left to spend with friends or family. You maybe feel like you’ve got terrible ‘flu, but you’re pushing on anyway. And this doesn’t just get better. In fact, with exertion, you may get worse.
So, what does your doctor suggest?
Cognitive Behavioural Therapy
This is one of the two most commonly suggested treatments. Unfortunately, it works on the assumption that the symptoms are psychosomatic. So, if the patient, with the guidance of a psychiatrist, can learn how to modify their thoughts and behaviour, all these symptoms will go away in time.
However, if stress (this links to the malfunctioning of the Central Nervous System) is really the root cause of the illness, then possibly this treatment could have benefits. Some people will tell you it does. But there is no evidence that it is a cure, or even an effective treatment for all.
This may be an unfair title to give these treatment options, but I see them as a development of CBT. Now, here in the UK, CBT is (theoretically) available free through the NHS. I say theoretically because it is an area that has suffered from under-funding. Plus it is used to treat all sorts of conditions, not just CFS/ME. So, it may not even be available in some areas. In others, you may be looking at waiting lists of months to years.
So, you could go privately or pay for one of a number of treatments that are similar, but which have been developed specifically to deal with CFS/ME.
I have experience of Mickel Therapy (for me personally: very interesting, slightly helpful, but not an effective treatment). You might also come across Lightning Therapy. If you’re intrigued by these, check out the links.
Graded Exercise Therapy
This is carried out under the supervision of a physiotherapist. So, the patient will be given a carefully guided program of exercise to carry out to rebuild their physical fitness. The danger here is that this can cause further damage.
Research is now showing that the body’s cells are sustaining damage because they are trying to function with insufficient energy to power them (the Mitochondria I mentioned last time). If this is the case, then forcing them to do more without healing the energy supply issue, is actually doing damage.
So, this is why a lot of people report feeling worse on a GET program. Why do some people report feeling better? Well, there is value in this approach if it is done sympathetically and at the right time. Clearly, if you just lie in bed for 10 years, you can expect natural muscle wastage. Plus, we are all being made aware of the importance of exercise to keep a lot of the body’s systems healthy.
So, there is a modified version of GET, known as pacing. With GET, the emphasis is on steadily moving forwards trying to hit a ‘higher’ target each day/week/month. With pacing, the emphasis is on listening to the body and doing what you can without causing further damage. So, on a day-to-day basis, you may not be constantly doing more. But longer term, the ‘average’ level of activity will gradually increase.
Yes, you read that right. Anti-depressants are offered as a treatment for CFS/ME. In the words of my specialist, ‘we’re not quite sure why they work, but some people say they feel better with anti-depressants, so maybe you’d like to give them a try?’
He was right (not for me – I declined his kind offer!). Some anti-depressants do help with some of the symptoms, like low mood, sleep disorders and maybe even panic attacks. However, a lot of people report feeling a lot worse or getting terrible side effects.
There hasn’t been, to my knowledge, a proper clinical trial. So, why are these powerful drugs being handed out to treat an illness that isn’t understood yet?
The first reason we desperately need this clinical trial
So, am I about to reveal a revolutionary new treatment called healing beads? No. But I could. None of the treatments I have outlined above have been through proper clinical trials.
The CBT and GET tend to be recommended because they ‘might’ help and they ‘shouldn’t’ harm. It’s a bit like a placebo to try and get the patient to shut up and go away, I feel.
If they help, great. What if they don’t? Well, then you find yourself in the minefield of researching on the internet. You are at the mercy of any quack who wants to sell you a cure. Some of these are genuine, or at least well-meaning. Some are actually harmful, or will just relieve you of the money you are no longer able to earn.
Anyone with a ‘mystery’ illness is incredibly vulnerable. So, imagine if this is you. Or maybe it’s your spouse, partner, child, parent.
So, if you find this a compelling argument, please go ahead and help raise the money for this clinical trial.
Let me try another argument…
The clinical trial I’ve been banging on about is actually to test the treatment I’ve been using for the past six months. I’m not going to argue this is a miracle cure, maybe not even any kind of ‘cure’ at all. (A little ‘aside’ here: CFS stands for Chronic Fatigue Syndrome. In ‘medical speak’ ‘Chronic’ means ‘it will never go away’. So living with Chronic illness is really about learning how to manage the symptoms and live a normal life).
The clinic, (the Optimum Health Clinic), has been running for many years and treated thousands of patients. Some have returned to a normal, full life. Some have just seen improvement. The reason I believe this is a good treatment is it has gone back to trying to understand why these symptoms are occurring.
They still don’t have a ’cause’ in the sense of a single ‘thing’ that can be pinpointed and treated. But they do have a really good picture of the ways in which the body is mal-functioning and how this might be happening.
The treatment protocol to be trialled
So, yes their treatment involves a psychological element. Part of this is to reduce stress and help support the Central Nervous System. Partly, this is about the practicalities of learning how to live with CFS/ME.
Their treatment also involves a pacing program. Not something that is dictated, but a way of learning how to read your body and manage it appropriately. So, you learn when rest is imperative and when gentle exercise will help. Yoga and meditation also form part of this approach.
Then, the treatment also involves a nutrition element. This is about testing to see which systems are working incorrectly. So, I now know I am deficient in a lot of key vitamins, minerals and essential hormones. The clinic then works with each patient using nutritional protocols (supplementing with vitamins and minerals) to try and get basic elements that we all need back to their correct levels. None of this is guesswork, or a one-size-fits-all approach. It has been tailored to treat what my body needs. That may or may not be the same as another patient’s needs.
So, I’m backing this because I have experienced first hand that it is a system with merit. We need the clinical trial to determine just how much merit. If it proves to be effective then the trial gives a basis for rolling this out so that it is more widely available and hopefully more affordable. Currently, with CFS/ME, your chances of getting effective treatment are also strongly tied to your wealth.
Back to those healing beads
Well, I did start by promising you some sort of explanation of the healing beads. They are a ‘thing’ – at least Google seems to think so!
But the healing beads I’m talking about are the treatment I inadvertantly stumbled upon. I only started beading because I had this illness and I needed something to do. I was so ill when I first started that I could only sit up in bed for half an hour at a time. But that was enough to make the little flower that you see in this photo.
In fact, that little flower gave me such a sense of achievement and worth, that it directly led to all that I do today on this website.
What I didn’t realise at the time was that beading really does have a therapeutic effect. For me, it was acting in much the same way as meditation. So, I thought I was just enjoying a new hobby and rediscovering a purpose for my life. In fact, I was also starting to calm my damaged central nervous system and to pave the way for my body to begin trying to heal. I do indeed have healing beads!
So, that brings me rather neatly to my next topic on this journey…how does CFS/ME affect your life? Join me next time to find the answer!
Oh, and don’t forget to donate – thank you!