With Myalgic Encephalomyelitis (ME) our world usually gets smaller. We can no longer go to the places we used to go to. We are missing from most aspects of normal life. In the UK many of us have found that treatment recommended in the official clinical guidelines shrinks our world further, instead of increasing opportunities. Val’s story is one of those personal experiences:

In my 20s I raced a single person sailing dinghy, in my 30s I had 2 children, and competed in cross-country running, in my 40s I trained in karate to brown belt level, in my 50s I took up dancing: I’m no lazybones!

After becoming ill on holiday, it took a year to be diagnosed with ME by a sympathetic GP, as she tested me thoroughly for all sorts, and, following the guidelines, she sent me for CBT and graded exercise therapy. I bear her no malice; she knew no better.

From the outset, I felt I was treated by the practitioner as suffering from a psychological disorder, but threw myself wholeheartedly into the treatment. I trusted them that they could make me better.

After talking about routines, and being quizzed about my feelings, emotions, and depressive tendencies, we got round to exercise. I had to identify a distance I could walk – I said I could walk down to my local shop and back up the hill, now and again. (about 500 metres. I didn’t say I could occasionally walk the mile and a half around a local hill fort, as I knew I couldn’t do that very often).

I was told to walk to and from the shop every day, without fail.

I tried, but soon after I said I was struggling; I couldn’t do it every day; however, I was told I needed to. I persevered, but it was harder and harder. Eventually I stopped, and at my next session, measured my heart rate walking from the car park to the appointment – about 200 yards on the flat; my HR was 164; higher than the maximum for my age.

I told her I wasn’t continuing, and thought the whole setup was wrong. Once I mentioned that I was now part of an online ME support group, her attitude changed oddly. She offered that I finish my sessions with a physiotherapist, rather than be marked down as non-compliant. The physio said I shouldn’t push myself at all, but to concentrate on flexibility rather than exercise, and showed me some gentle movements to help.

This was almost 4 years ago. I am still reasonably flexible, but to this day, I cannot walk to or from the shop. I cannot walk a quarter as far as I could before graded exercise therapy, I struggle to go upstairs. I can’t even drive as far as I used to, without massive Post Exertional Malaise. Some days I can’t leave the house at all. I can’t think of any pre-GET days where the fatigue or later Post Exertional Malaise was that bad.

ME made my world a lot smaller; graded exercise therapy cut that small world down again.

We’ve given up on the holidays we had planned after my husband’s retirement, we can no longer even go on any walks together, we have never been to the hill fort again. I can’t go visit my older sister, or my children. I can’t keep up with people my own age; I can’t even keep up with a friend in her 80s who I used to help with her garden; I can’t even do my own garden.

Title image picture of village

If you found this post interesting, read our series of posts about Missing More After Graded Exercise Therapy.

Please help us amplify patient voice on this issue. This summer the UK clinical guidelines are up for review and we need to make sure that this time patient voice is heard.

We need you (wherever you live) to harness your social media reach and share using hashtags such as #MillionsMissing #MissingMoreGET #MEAwareness #NICEguidelines #PatientVoice #NHS #healthcare #DisabilityRights #PatientEngagement #PatientExperience #chronicillness

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