Tory Majority Day 22: ME Association Report And A Conversation About CBT

In the last 24 hours I had a conversation that has changed my outlook on CBT and CFSME.

Hard on the heels of that chat, this morning I woke up and found that the ME Association had published a report into patient experiences of GET, CBT and Pacing therapies. I read it.

In that report, it says:

“An appropriate model of CBT – one that helps patients learn practical coping skills and/or manage co-morbid issues such as those listed above – could be employed, where appropriate, for ME/CFS as it is for other chronic physical illnesses such as multiple sclerosis, Parkinson’s disease, cancer, heart disease, and arthritis etc.; and we recommend all patients should have access to such courses as well as access to follow-up courses and/or consultations as and when required.”

Before I read today’s report I asked my Twitter friend @gherkinette whether she’d mind if I wrote about our conversation and she said she didn’t mind and it was OK to link to her Twitter profile.

What’s up with CBT? 

In case anyone reading doesn’t understand what CBT is, it’s a form of psychological therapy that details your thoughts and feelings from week to week and asks you to address them by doing ‘homework’.

It’s very directional and targeted. It’s also one of the few forms of therapy that measures outcomes for the patient as a part of the treatment process and therefore is very strongly represented in research literature as an effective therapy model.

Originally CBT therapists had to also be clinical psychologists, but now you can gain a qualification in CBT with another relevant qualification. If you are thinking about doing any sort of therapy, you should check it out first with the governing body of that person. In the NHS services you are assured that work has already been done.

My advice is to always ask what their experience is of working with someone with ME and also what they know or believe ME is caused by. I asked my counselor both questions before I started counselling with her and I checked her qualifications too, of course.

The CBT CFSME Debate

I’m like you. I have a knee jerk reaction to treatments that suggest that my disability, CFS / ME is psychiatric / psychological in origin – that symptoms are”in the mind.”

When I wrote this post about the client centered counselling I do every week I am so defended and defensive about it that right at the top, I wrote a disclaimer: “I’m on your side.”

I’m going to say it again. Please don’t bombard me with lots of outraged messages about the ME / CFS / Psychiatry debacle. I know about it, and I’m still on your side.

The conversation

Gherkinette and I emailed and she told me that she found a CBT therapist via an NHS ME service. She added that her therapist was essential to helping her pick through what in her life was adversely affecting her ME symptoms. Her therapist gave her the tools to look at that squarely in the eyes and make changes in order to nudge her towards an improvement in her symptoms.

Crucially, and completely in line with the findings in the ME Association report, she said that her CBT therapist was dubious about whether Graded Exercise Therapy would help someone or her with her ME symptoms and right from the start she believed that Gherkinette was ill. 

In fact, a lot of the work she did in CBT sessions was about changing an internal dialogue she had that she’d picked up from society, the medical profession, people, the DWP, etc, that she wasn’t ill.

Once she’d accepted she was ill, her therapist then started to look at the patterns in her life that she needed to alter to accommodate her illness. This included, for instance, introducing proper rest breaks and adjusting her sleep routine and getting rid of the things internal and external that are a barrier to maintaining her health.

She said that the therapist was her life saver in so many ways. She added that at times, it was gruelling, but she has never been more glad to have found her.


Some months on from her NHS based treatment, she is now “in remission.” She said for herself it was seeing this therapist that started to make the change.

Open mind

I went into this conversation with a completely open mind. After all, if someone says something works for them we should listen, right? Just because it sounds like it’s a treatment that might lean towards the Psychiatric debate that’s been around for years about CFSME doesn’t mean to say that it IS part of that dynamic.

Every situation and every person is different, whether they are the therapist or the client.

After all, CBT on it’s own isn’t the bad guy here, it’s the practitioner that matters, it’s the philosophy they have in treating patients with CFS and ME that matters and as the ME Association report says, it’s the belief that a patient has a real, proper, biological illness that matters.

Hearing what Gherkinette had to say has affected me in many subtle ways.

I’m still thinking about what she said 24 hours on from the email! I keep seeing different things in it, different aspects to her experience and things that might be found from it that are right for people with ME.

It’s also so nice to connect with someone who’s had such a profoundly changing journey with ME and is prepared to talk about what that meant for her. It’s been great to have an open conversation about one of the most contentious aspects to the history of ME treatment as well and hear something different about it.

I feel touched by knowing that there is a pathway to healing ME that has worked for someone – we hear so little about that – and also that if you get the right therapist, they can make all the difference to someone’s health and well being.

Gherkinette signed off her email to me making another point.

She said she really thinks that we all suffer enough without attacking each other for making treatment choices that work for us. I completely agree.

We should support each other, not harm each other – words can hurt from people with CFSME as much as bad treatment regimes. Let’s try a bit of kindness on this topic.

It worked. I’m so pleased for her. She deserves it. I know seeing my counselor helps me a lot too.

Just because it’s a psychological treatment, doesn’t automatically make it wrong, right ?

© Lindy 2015 

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