One of my lovely lovely clients sent me a link today from the Telegraph.
The title read “It’s time for doctors to apologise to their ME patients” – OK so abit of background on me. When I was fairly new to this illness, in my teens I would scour the internet looking for articles like this, or the new ‘wonder drug’ or whatever new ideas people were coming up with for ME treatment, or how ME patients are swept under the carpet and I felt empowered. It’s in the public eye, we are all treated unfairly by the medical community, please understand. Or there is a new drug being made, they have found a link between A and B, I feel a cure coming on here… rubbish. Absolute rubbish. I’ve been waiting for these ‘so called wonder drugs’ for 12 years now. But the annoying thing is, I think people are sat waiting… GET UP AND ACT. We can’t wait around forever, we have our lives to take back! Anyway (rant over) basically I’m saying if you do suffer with ME then save your precious energy, there are articles out there but we don’t need to cling onto them for dear life friends.
Anyway, back to this piece from the Telegraph, I am writing this blog post because it raises some interesting points about CBT and GET (whilst completely contradicting what I just said above).
Basically it begins with how the medical community always believed there was no such thing as ME/CFS, it was all in the mind and people getting into negative thinking patterns (laughable).
Currently, on the NHS patients are offered two things. Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET).
OK so for those not in the know, CBT is basically talking therapy, (find me a person who suffers with ME/CFS and doesn’t have a level of depression/anxiety/low mood)… CBT is helpful to talk over whats going on in life currently, it teaches us new techniques of how we are to think in a more positive way. I’m not sure of the waiting list on the NHS at the moment or how many sessions you are allowed access to but I didn’t have time to wait, I was suicidal by this point so thankfully my parents paid for me to go private. I did CBT for years, I had ALOT to figure out and personally, I wouldn’t be here without CBT. I was literally life saving and it completely changed the way I see myself, the way I view this illness and the way I interact with the people around me who also have to deal with this illness and myself.
OK so GET wasn’t around when I was on the NHS (back in 2003) it was just called Pacing. Pacing/GET is such an engrained idea for me that I struggle to explain it. Basically lets think of everyone with a battery, most people have 100% battery and they go to work, look after their kids, exercise etc etc and then go to bed when their battery is probably about 20% and by the next morning they are back to 100% for their day. People with ME may only ever have 20% battery or 10% or even 5% so how are they going to use that battery? Going for a short walk will pull their battery from 20-10%, if they hit 0% battery they are in bed, unable to walk, eat, move or speak. So ME patients have to pace their lives, they may be able to go to a social gathering, but they may have to leave early, they may go to school but only for some lessons. They have to pick and choose very wisely on what they can and cannot manage.
Now thats what each of those are, however, a study has been done and apparently on the NHS neither of these approaches work. Literally, I was confused but also like oh ok maybe they are right.
Listen up, these approaches don’t work. IF this is all you are doing…
Firstly, if your having CBT, in order for it to work, you have to give your all. You HAVE to open up, you can’t tell your therapist 80% of what is going on. And you HAVE to do your homework. There is no point going to weekly sessions then not putting it into practice.
GET again is the same, there is no point seeing your physio then walking up a mountain and being in bed all week.
I 100% believe CBT and pacing are KEY in recovering from ME/CFS HOWEVER they will not ‘cure’ you. I think thats perhaps where this study has fallen down. No they won’t fix the issue but they help. Either we control the ME or the ME will control us. But we HAVE to look at diet!! The NHS has to look at diet, sure we can pace and look at the mind but whats the point if we are drinking diet coke all day and processed food!
PLEASE PLEASE PLEASE don’t listen if your doctors has said ‘There is nothing we can do for ME, learn to live with it’ – excuse me? Live with it? Erm no thanks.
OK so you have ticked off GET and CBT. People that is only scraping the barrel when it comes to recovery:
GET – pacing ✔️
CBT – Talking therapies ✔️
Detoxing
Adrenal health
Gut function
Thyroid function
Vitamin d status
Chronic infections
Sleep
Yoga/mindfulness
Self worth
THE FOOD WE EAT (I feel like there is a huge elephant in the room with ME/CFS management. FOOD PEOPLE FOOD.)
As always with articles there are two sides to every story. I do hope in the future the NHS can address this illness but living with it for 12 years I’m not sure they can. The NHS was set up to have babies and for people with broken legs, they can’t fix everyone. But we can help ourselves. I am a walking, talking example of that.
Never loose hope. I was bed bound, I was the girl who was told to live with it, “it’s too serious for you now”.
I believe recovery is possible… with the right approaches.