CBT (Cognitive behavioural therapy)
is often offered as a treatment for CFS/ME and is in fact mentioned in the NICE
(National Institute for Clinical Excellence) guidelines as something that
should be offered to CFS/ME patients. This is something that seems to enrage a
lot of CFS/ME sufferers. There is some evidence that CBT can help CFS/ME, but a
lot of sufferers take it as a personal insult because apparently it implies
that CFS/ME is a mental illness. Some sufferers are so adamant about it that
not so long ago someone doing research into the Lightning Process (often
considered to be like CBT to the uneducated) to treat CFS/ME received death
threats. Now to me that is just madness. I appreciate the CFS/ME sufferers want
a cure but any research is a step in the right direction and the Lightning
process is not just CBT and so what if it was? (I will talk more about the
Lightning Process another time). Just because you don’t agree with the research
being done is not an excuse for death threats. Some ME/CFS sufferers are so
wrapped up in getting a ‘cure’ that they seem to forget there are hundreds of
equally serious other illnesses out there that don’t have cures either.
No health professional has ever
said to me that they think CFS/ME is a mental illness. I know there are doctors
and other healthcare professionals who think that CFS/ME is depression and they
are wrong, but that is not related to CBT being offered to CFS/ME sufferers. Also,
whilst I understand that people object to CFS/ME being classed as a mental
illness, why are so many objections so vehement? Mental illness in my opinion
is a much worse thing to suffer from that CFS/ME, or certainly depression is. I’ve had both and if I had to choose, I would take the CFS/ME over depression
any day. Yes CFS/ME is horrible, but depression destroys you in a way CFS/ME
never can unless it causes you to develop depression. So it makes me angry when
people are so defiant about CFS/ME not being a mental illness. No, it’s not and
be bloody grateful it isn’t. These objections just make me think that people
don’t understand the seriousness of mental illness, as if it is somehow lesser
that CFS/ME. Well it isn’t, it is a set of illnesses of equal importance many
of which also have no cure
Now, why are CFS/ME patients offered
CBT if it’s not a mental illness? An excellent question. Well, CBT is not just
for treating depression and mental health problems, but I’ll come back to that.
Someone who suffers abuse can get help from CBT, and being abused isn’t mental
illness. Someone who is in a traumatic accident can get help from CBT and
someone with a chronic (long term) physical illness of any kind can get help
from CBT. None of these are mental illnesses, what they all have in common is
that they could all cause someone to develop a mental illness. Illnesses such
as depression, anxiety or PTSD (post traumatic stress disorder). CFS/ME
sufferers fit neatly into this last category and it is exactly for this reason
that they are offered CBT, as depression and CFS/ME together must be horrific.
In fact CBT in my opinion is for
everyone. Very few people really understand how our minds work without help. And
the vast majority of people think we don’t have any control over them. The
benefits of doing CBT are huge and give us a much better understanding of why
we feel certain things and how to deal with it. I cannot tell you how useful
CBT has been throughout my adult life, when just applied to ordinary everyday
situations. It constantly saddens me how many people I come across who believe
their lives are ruled by their emotions and the people/factors that cause them.
A bit of CBT could change so many people’s lives and show them how to live
happily without letting their emotions control them. This is a dream that I
realise has no future, as there is never going to be time that I can foresee
where all people are automatically offered and given CBT. However, CFS/ME sufferers are offered it and
it is a shame that most aren’t grateful for this help. Many people have no idea
who difficult it is to get CBT on the NHS even if you have depression. One day I hope there will be cure, but until
that happens I will take all the help I can get, including CBT, to so that I can live relatively
happily with this illness.
Melissa. I have had a course of CBT for ME/CFS and agree that there is nothing to fear. It is most certainly not a cure for ME and my therapist told me this at the outset. He also told me that ALL illnesses have physical/emotional/behavioural elements and at no time did he ever suggest or even imply that ME is a mental illness. It may be that some therapists are better than others so I may just have beeen lucky.
ReplyDeleteTo me CBT is just common sense and it quickly became evident that I did not have any 'negative illness beliefs' to challenge.
Did I gain anything from CBT? Possibly. I think it can be applied to most stressful situations, including any illness. It can help you cope with the problems created by a long term illness even though it is not, and should never be offered as, a cure.
I think people who are offered CBT should at least try it - you can always drop out if you want to and to just MIGHT be useful!
Thank you for your comments. It's good to know I am not alone in my belief that CBT can be helpful for CFS/ME sufferers to help cope with and mange their illness.
DeleteHi Melissa sorry about the multiple posts this is not aggressive or a rant- i just cant explain in a short post. I understand your frustration, but sadly not all CBT is like the form/protocol you experienced. And i agree that in many ways mental illness can be worse and is not to be sniffed at. You had a good experience and i am really happy for you and am certainly not anti CBT per-se, for ME or anything else, even as you suggest just simply living a healthier life.
ReplyDeleteHowever from yr post i dont think you can be aware of what is going on at many of the CFS CBT/~GET clinics atm. I have posted much of the following on yr MEA fb post so skip to the last paragraph if you already read that.
The problem is that even when CBT is delivered by 'experts' in ME/CFS... it depends on whether the therapist has been taught that either a)ME is simply an aberrant illness belief leading to deconditioning - and so therapy needs to focus on 'helping' the patient to change their beliefs/reality to believ that the sensations of illness they are experiencing are not illness at all but rather are simply *normal* experiences that they are misinterpreting. GGGRRRR!
Or b) whether the therapist believes the patient is ill - ORGANICALLY ill and needs help to manage/live with/cope better- which i know can be very helpful indeed.
Sadly much of the CBT offered/delivered to patients currently, is the former variety, and the most unethical part of that is that some of the therapists start by telling the patient they believe ME is "real", in order to gain the patients trust, they just dont explain they believe it is real - as a delusion. And thats what the people who get irrate about it and refuse is are irrate/refusing it for.
The issue isnt CBT or no CBT, but good ethical CBT versus abusive (which is what i believe the former kind to be) CBT.
Thank you for your comments. I did see you reply on the MEA FB page too. I had no idea 'bad' CBT was so widespread. I had assumed it was in the minority. Both the CFS/ME services I know of (Bath RNHRD and Bristol at Frenchay Hospital) have been excellent, it's so disappointing to hear they are unusual. I fully appreciate 'bad' CBT could be hugely detrimental. Definitely something for me to reseach for another post at a later date.
DeleteCBT is brilliant for some things i agree, and would benefit many if not all of us in some form, - i mean if you believed that if you left the house after dark you might be eaten by lions... CBT would be a good idea to help challenge and eventually change your beliefs so they were more in line with reality and you'd be free of the anxiety and the self imposed unecessary restictions of needing to stay indoors at night.... But not if you lived in the centre of the Serengeti wildlife reserve!!! Because then yr beliefs *would* be in line with reality.
ReplyDeleteThats the issue! - CBT is in large part about changing your beliefs - so they are more healthy helpful and 'realistic'. But tragically many of the therapists think they *know* that we are not ill only deconditioned, & since for many of us that is innacurate they are challenging *rational* HEALTHY beliefs and behaviour as if they were irrational and maladaptive. Thats why people are angry and resistant. It's not the therapy it's the therapists' beliefs that are the issue.
And to illustrate just how different CBT for ME is to the CBT for mental health ...- imagine that you had severe bipolar disorder and the CBT therapist you saw told you she believed bipolar was 'real' but only in the sense that you were misinterpreting your symptoms as something to be concerned about and behaving in a maladaptive way because of that leading you your becoming depressed. And therefore geared the therapy to "assist" you to see that what you were experiencing wasnt abnormal or a sign of mental illhealth -but that *everyone* had 'ups & downs' you just misinterpreting what everyone experiences when they dont have been a bit fed up or excited and theyre not used to it.
And then when you didnt get better or couldnt accept their skewed reality, they then told you that unless you stopped believing that your symptoms were abnormal/sign of illness you would always suffer from them. - Because sadly Melissa that is the mental health equivalent of what much of the CBT offered/inflicted on ME patients is about at the moment. Thats the protocol and the theory behind it. and if you dont believe me read the PACE trial manuals. And listen to the experiences of those who have attended some of the major clinics in the UK. It's like being given CBT for PTSD by someone who believes that the trauma from which you developed PTSD was not traumatic at all, it only traumatised you because you *thought* it was traumatic, when in reality it was a regular, common everyday experience that everyone experiences, you simply misinterpreted it. And if you could just stop believing it was traumatic then your PTSD would be, if not cured, then a lot better. That would be considered abusive - wouldnt it? And thats why people are so vehement and defiant.... naturally.
Thank you for your comments. I fully appreciate what you are saying. It looks like a post on good and bad CBT is definitely in order. You make a good point and I have no doubt what you are saying is true. So far my only discussion about this have been with people who refused CBT point blank and seemed to think they would just wait for a cure to be discovered, a view I did not find very realstic. These people had no experience of CBT in any form, but had formed an opinion about it anyway. It's good to hear the views of people who have actually experienced CBT done badly.
ReplyDelete