ME: Healing The Past

There comes a time when we feel ready to look at, and heal the past.

I've been musing over this recently. A few weeks ago, during ME awareness week, Dr Hilary Jones talked about the Lightning Process on the 'Lorraine' TV show. They featured a lady called Ginetta before and after she did the Lightning Process.

What interested me was the backlash from some ME groups and sufferers speaking out vociferously against this item. Such strength of feeling being expressed against the Lightning Process and Dr Jones! The fact that someone had improved their health and well-being was pretty much ignored.

The second casue for reflection was attending a reseach seminar where Prof Peter White talked about the results of the PACE trial. This RCT (randomised controlled trial) looked at 4 interventions for ME: SMC (standard medical care),Pacing, CBT (cognitive behaviour therapy) and GET (graded exercise therapy). The two that showed most benefit were CBT and GET; Pacing and SMC seemed to have little positive effect.  It seems that extending the boundaries of capability is a more effective way of improving the life of someone with ME than remaining within the boundaries. Crucially, the statistics showed that neither CBT or GET made people worse; this was specifically targetted becasue it had been one of the concerns of the ME community.

As well as explaining the research results, Prof White showed us extracts of responses from the medical community to the piece of research; these reflected that the research community held this research in high regard as a piece of research. He then showed us extracts from responses from the ME community via some, though not all, of the major self-help groups. They expressed anger and horror at both the methodology and results of the trial. Requests were made to The Lancet to remove the piece of research; they were declined..

I used to be one of the ME community, so I understand where these responses are coming from; they have fought for years to have their illness recognised, to receive benefits, to gain carers etc. It has been a battle. However, there appears, in the process, to have developed a huge mistrust between those who try to help them and the ME community itself. That mistrust has developed into, in some cases, bitter anger.

Is it now time to heal the past? What would need to happen for us to do that? Do we, as people who work with ME sufferers, need to listen even more carefully to them? Are they able to listen to us? What needs to happen for them to be able to rejoice in the fact that CBT and GET (and I would add Lightning Process - which has at least anecdotal evidence of people recovering) enable people to get better?

 As a practitioner who works with people with ME, and as someone who once had that illness, I want to find a way of healing the past, and moving into a brighter future for us all. Is it now time to heal the past?