GET/PACE Trial

Hello,

I haven't commented on this previously because I am not a medical expert and thought I'd leave it to charities etc to discuss it fully. ME Foggy Dog concentrates on raising awareness of ME from a human perspective and usually avoids serious political stuff. However, I have now had a few days to think it over and here are my thoughts.

As I have said many times before, prior to starting Foggy I knew very little about M.E. I received a half-hearted diagnosis and was sent for CBT after having symptoms for 4 years. The only symptoms I really understood were fatigue and post-exertion malaise. I have learned over time and now realise that I have many more symptoms than I thought and appreciate the very complex nature of the illness and associated political nuances.

Since diagnosis in 2011, none of the GPs I have seen have ever mentioned GET to me (I have changed practices during that time). GET has never been on my radar. I have been encouraged to exercise more as a way to tackle my low mood/anxiety/depression but it has never been suggested that exercise would improve my M.E.  I do wonder if it was a sideways tactic to try exercise and 'help' my M.E, but that's just a guess. I'll never know! 

My lack of awareness of GET is hardly a surprise. My ME brain can't cope with reading full text research documents so I tend to read summaries from other people (Thank you to those people who work on creating summary documents!) Sometimes, I get the impression that ME isn't on the radar of many of the healthcare professionals I see. I see mentions of drugs and therapies online that I have never heard of let alone had suggested to me by my doctor. I used to be very naive, I believed what I was told by my doctor and took their advice as fact. I don't anymore. Our M.E community will always know more about our illness because we have to. Many Foggy Followers have tried many....many...different remedies to see if they can find a way to get an improvement in symptoms. Some might think that is dangerous...yes, I suppose it could be. But that's how desperate our community is. 

This week saw a Parliamentary debate on the PACE trial.  I RT'd, shared and commented to make sure Foggy's Followers could engage with it. Hand on heart, I had very little idea of what I would be watching. These points are what I took from it:

• DWP part-funded the study (WTF?!  Dodgy) Non-UK people, DWP=Department of Work and Pensions. I would suspect that they encouraged results to get more people back in work and off benefits.
• If Post-Exertion Malaise is a significant symptom of M.E, how on earth could Graded Exercise Therapy (GET) help us to get better? Is it not BLATANTLY OBVIOUS that exercising won't 'cure' us?
• The lives of ME sufferers were put at risk to trial a ridiculous research hypothesis (I realise that legally these patients gave consent but as I have said above, sufferers would try ANYTHING to get better).
• The biggest shock was the link to insurance companies. I personally think it is disgusting that many ME sufferers have to undergo GET in order to get insurance cover. They have to risk significantly damaging their health to get cover. I did not know that prior to the debate.
• Caroline Dinenage MP - Clearly doesn't have a clue about ME as she said sufferers can be bedbound for weeks. WEEKS??!!!!! Try months, years, or decades (depending on severity of ME)! The impression I got was that she was there to fill time (she repeated much of what had already been said) and to ensure the subject was not fully debated. The debate was only given a 30 minute slot.
• Carol Monaghan MP is Foggy's latest favourite lady. She did an absolutely fantastic job. Highlighting our plight with determination and empathy. Thank you Carol.

So, now we have dreams of a wider debate, let's keep our fingers, paws, eyes, and legs crossed that GET can be debated fully in the near future.  To hear a member of Parliament state that GET/PACE trial was a 'miscarriage of justice' will, hopefully, be an eye-opener for many.

Here is the ME Association response to the debate  - http://www.meassociation.org.uk/2018/02/government-funded-me-cfs-trial-one-of-greatest-medical-scandals-of-21st-century-20-february-2018/

Love,

Sally 

and Foggy (OBVIOUSLY) xxxx