If You Think Wellness Is Expensive, Then Try Illness

Thursday 31 March 2022

Welcome to March’s edition of the M.E. Support Blog, and a very warm welcome to our newest followers on the M.E. Support Facebook Page. In this month’s post I’m exploring those elusive ‘cures’ and setting the record straight on some of the myths around treatment and overall understanding of M.E.

As I’ve said in previous blog posts, I use meditation in a big way these days; it is the staple of my mental health toolbox. I have often recommended meditation apps to others; I use several different ones and recently I decided to explore one of the more well-known apps, called Calm. The app overall looks great and offers a larger selection than ever before and I thought I’d give one of their ‘seven day’ courses they offer a try and started with stress management. Within seconds I heard the practitioner say, “Stress can lead to many illnesses and cause Chronic Fatigue Syndrome”, and I really had to focus and allow myself the time to see the meditation practice through. It was a clear sign to me how much false information is still out there and how so many professionals in all fields don’t have consistency when it comes to M.E. treatments or causes.

I want to set the record straight for anyone reading this who doesn’t suffer from Myalgic Encephalomyelitis and has little understanding about it. Stress does not cause M.E.: it is a neurological illness just as Multiple Sclerosis is and it’s just as serious and life changing; however, stress can trigger relapses and flares in the illness. There is a theory that traumatic situations may bring on the onset of the illness; however, it is not psychosomatic and has no current cure.

A lot of the time I feel that wording can very much hinder people’s viewpoint of the seriousness of chronic illness, especially in this case, M.E. Before we navigate through the treatments available, from doctors to the depths of the internet, I feel something must be made clear: M.E. can’t be cured; however, you can adapt strategies that can help you cope more effectively. This is different for everyone who suffers from it as it has a broad spectrum from severe to milder cases, and something that works for one person isn’t a guarantee for another. With the root cause not one hundred per cent certain, whether it be viral or genetic forms of the illness, this makes sense that results can vary. Coping by no means equals cured, it just makes life that small shred more bearable at times.

 

Listicle – Doctor Prescribed Treatments

There are three common treatments a doctor or GP will recommend for an M.E. patient.

  1. Energy Management – I touched upon this in January’s post explaining the ‘Spoon Theory’ and how it can also be known as ‘Pacing’. The most important part of energy management is knowing that even on days you feel you can do more, it doesn’t mean you should do more. This treatment is probably one of the key parts of life with M.E. and it should be tailored to each individual.
  2. Cognitive Behavioural Therapy – For those who are ‘M.E. Veterans’, CBT can be a touchy subject. It is now suggested to help with the mental health impact that chronic illness can have on the individual; however, it wasn’t always the case. CBT used to be part of the treatment plan because doctors were convinced it was a psychological issue. It should be considered as a coping strategy and not a fix.
  3. Medication – Doctors will prescribe a lot of different medications in regards to M.E. and it can be difficult to get a good balance with these. Some may prescribe painkiller medicines used strictly for pain, such as Tramadol. There are others that can be prescribed to help with pain but aren’t designed specifically for that: Gabapentin and Pregabalin are usually used for epilepsy, anxiety or nerve pain. There are some anti-depressants that can also be used to treat pain : the most commonly prescribed is Amitriptyline. For me, the side effects didn’t outweigh the benefits that I got from taking the medication, but again, everyone is different. 

Side Note: Beware of any specialist or doctor who now suggests GET (Graded Exercise Therapy). GET should no longer be advised as a suitable treatment of M.E. as NICE (the National Institute for Care and Health Excellence) revised their Guidance in 2021 and deemed it unbefitting.

 

How many of us have been talking to someone about our illness and have experienced a reply similar to “Oh, my daughter’s friend’s mum’s cousin had that and she got this supplement online. She has been taking them for a few months now and she’s just finished training for a marathon!”? That’s great for her; I’m really glad the supplements found in the dark corners of the internet cured an illness that even scientists don’t understand fully! There are, however, so many ridiculous offerings online promising to improve M.E. symptoms, and would you believe it, all it takes is twenty-five pounds a month or a one-off fee of just one hundred and ninety-nine pounds.

Hint: Anything that is recommended by a tabloid or endorsed by a celebrity is your first red flag and you should back away, slowly, so you don’t use too much energy.

 

I wanted to see what minefield is out there for someone who has just been diagnosed and hasn’t had any proper information about chronic illness treatments. I decided to do some research and below are some of the results found in a search for ‘Cures for M.E./CFS’.

Please note: I haven’t tried or tested any of these products and I have no idea if they actually work; however, I do know this illness and I can tell a ‘wallet burner’ when I see one.

  1. Do you want to clear brain fog in 45-60 minutes? This is the claim made by Brainzyme. Do I think it works in general? There’s a good possibility, as I am not one to discard vitamins or natural supplements. However, I don’t believe that after taking one capsule the brain fog that can come along with this illness will clear in forty-five minutes.
  2. Triple Strength supplements to regain your energy? You know what they say about things that sound too good to be true, right? They usually are.
  3. Tired all the time? Tiredness and fatigue blood test you do at home that will tell you what you are dealing with and how to improve your symptoms. Does it work for anaemia, thyroid problems and vitamin D deficiency? If done properly, I’d say yes; however, it’s not going to tell you anything M.E.-related. It can only rule out other things and you’d be wasting £69.99 as a doctor can check all of this professionally for free.
  4. After a short while the pain is gone. Sounds wondrous, right? It is also endorsed by Matt Dawson and the Daily Mail. B-Cure Laser Pro seems modern and a little bit swish; however, when a company has spelling mistakes on their websites, and the product is endorsed by multiple sports personalities and newspapers, methinks they protest too much. Another red flag? You have to fill out a form to get any information and you need a consultation just to find out the price.
  5. The Optimum Health Clinic. This one is a difficult call and I’m really dubious about it. I’m not sure if I’m really jaded here, but this one gave me a gut feeling that was really uncomfortable. It says it is an award-winning clinic and registered charity with all profits going to M.E. research. These are things that don’t sit well with me. The statement of: “I myself suffered from severe M.E …” and the word ‘recovered’ started my untrusting vibes. If they are truly award-winning and a registered charity, surely they should know that full recovery and using the past tense are some things that shouldn’t be thrown in when considering the future of this illness? If anyone has had dealings with them and has had real results, please do tell us about your experience. The website gives me ‘call centre taking all your money’ vibes and they want M.E. patients to pay for psychological (sessions lasting up to one and a half hours, for an M.E. sufferer?), nutritional and medical treatments that it seems could be offered via your doctor/GP.
 

I hope it is clearer to anyone who reads this that M.E. and other chronic illnesses are extremely complex and that there is a big difference between finding ways to cope and getting some sort of respite from symptoms and a cure. It is easy for people who don’t suffer each day to throw around solutions and even easier for companies to try and cash in on the despair and desperation that comes along, when you wish someone could take away your suffering. Unfortunately, for now, it’s down to doing what is best for you to manage your symptoms, knowing your limits and not being too hard on yourself on the days that those limits are smaller than other days. Get through your day the best you can, that’s the most important and heroic thing you can do.

Thank you for taking the time to read this month’s blog post for M.E. Support. Please do like and share this post and comment about your experience on the M.E. Support Facebook Page. You can read previous posts anytime on the M.E. Support Blog. April’s edition of the blog will be the start of the celebration of the 30th anniversary of International May 12th Awareness Day.