Someone at the M.E. Association said something accurate and wonderful about the PACE trial

I read this article, MEA chairman Neil Riley unpicks a central thread in the PACE Trial | 16 February 2014 ‘Recovered’ – do you only feel better?, on the M.E. Association website yesterday and, if I didn’t have the flu and hadn’t pretty much lost my voice, I would’ve been shouting “YES! EXACTLY!” very loudly. Instead, I just did that inside my head and decided to blog about the topic.

It’s so hard to know where to start because, honestly, I just get red flags left, right and centre over ‘treatments’ (yes, most of the time that I use that word in this post, it will be inside ‘these’) that are often applied to patients in the overly simplistic terms of “think differently and do more”. M.E. is not a psychiatric (psychological? psycho-something-else?) condition. It is not a caused by a fault in how people think. Obviously, your state of mind and how you are mentally and emotionally equipped and supported to handle a physical illness is hugely important and should never be ignored, but if a ‘treatment’ seems ridiculous for another physical illness (Just choose not to have cancer! Making emotional changes will cure your cystic fibrosis!), then chances are it’s equally as ridiculous for M.E.

Graded Exercise Therapy is a weird one. It is absolutely and utterly illogical to prescribe that as a ‘treatment’ for someone in the acute stages of M.E. because that is precisely when you need to NOT be doing things, NOT be pushing yourself, NOT be doing anything other than resting as much as possible. Prefacing this with “in some cases”, “for some people” and “where appropriate”, doing physical stuff and things can be ok, good even, if you are ABLE TO, and even then, it’s a huge and complex case of doing it within reason and moderately, gently, carefully etc with complete awareness of, and respect for, your own physical limitations. One of the main characteristics of M.E. is that doing tiring, exertiony stuff can seriously mess a person up. Clearly I’m not using medical terminology here, but you know what I mean. Activity should be carefully managed. M.E. patients should not be pushed beyond what they can physically cope with and recover from because it is DANGEROUS to do that. This is not a situation where pushing through the exhaustion and pain will result in you coming out the other side stronger and better. It just isn’t.

Also, this condition is one of remission and relapse. That means good (or at least less completely horrific) days/weeks/months interspersed with bloody awful ones. Sometimes relapse can be identified as the result of something specific, like an exhausting ordeal or an illness like the flu. Sometimes it just happens (and you bust your own head asking yourself why). It’s also a condition where recovery occurs for different people at different rates. Some people get better within a year or two, some people take longer, some never recover. That means that there are a million and one reasons why a person with M.E. might feel better today than they did yesterday or last month or last year, and it’s entirely possible that while some people might get better-better, plenty live in a constant state of up and down. This may coincide with an experience of ‘treatment’. It may not.

Talking from a personal perspective now, there’s a huge element of positivity, hope and determination in how I view my illness and my situation. Yeah, I get down sometimes. Horribly down. Angry, pissed off, miserable, frustrated, all that stuff. Cause who wouldn’t? But generally I look at my life as it is and I feel like “Yeah, it’s been worse than this and I’ve gotten through it, so I’m doing pretty well right now”. I tend to consider the good stuff, the stuff I AM able to do, over the bad stuff and the stuff I’m not able to do.

Like I have a job. I do volunteer work. I have a social life. I can do some moving around sometimes. I’m doing better in general than I was when I first became ill 9 years ago.

The other, equally as realistic and honest, view of that situation is that I can just about manage to work part time from home, which most of the time kind of allows me to afford to pay my rent and bills. I am involved in facilitating groups of volunteers for fire festivals for a couple of months twice a year, which involves leaving the house twice a week and working with supportive people who are aware of my condition. I see my friends cause they come and visit me and are sensitive to my limitations so are happy to have short close-to-home outings or just evenings at home for chats and tea. I can sometimes do yoga and go for short walks, but the rest of the time I have difficulty sitting or standing for any length of time, and there are many days when I can’t do anything at all. I’m in pain all the time, but I’ve gotten used to it so I can cope with it better.

This is all completely and utterly dependent on having at least 8 hours of uninterrupted, comfortable (i.e. in my own super-squishy bed) sleep a night, being able to go to bed when I’m tired, wake up naturally and get up when I’m able to. It’s also dependent on me being able to stop when I need to, rest when my body tells me to, eat a healthy balanced diet, keep stress to a minimum, avoid people with infectious illnesses and generally look after myself mindfully and carefully. This is not always possible or realistic, cause life.

When someone asks how I’m feeling, I tend to automatically focus on the emotional and on the positive, cause I’m generally pretty ‘up’ most of the time. I’ll talk about something that’s made me smile recently or felt like an achievement or been a good experience. I’m usually fine, or good, or great, or awesome. On a bad day, I’m feeling a bit rough, but I’m sure tomorrow will be better. No-one apart from my husband or very close friends ever witness me in full-on sick-as-all-hell mode, because I’m not in a fit state to go out or be around people when my symptoms are really bad. If the first thing you knew about me was to have met me on a bad day (or during a bad week or month), or to have read one of my venting-cause-I’m-sad-today posts on here, then asked how I was and I said “Great!” or “Much better, thanks”, you might be tempted to start throwing the word ‘recovery’ around.

But here’s the thing. I am not recovered. I am nowhere near my pre-illness state. I cannot do the vast majority of things I could do before I had M.E. My life is still severely and dramatically restricted and limited by this condition. I cannot get out of bed at 5am, go for a run or a cycle, get ready for work, commute, work at full day, maybe stop for grocery shopping on the way home, repeat four more times, then spend the weekend mountain biking, camping or dancing. I cannot work full time. A full week’s exercisey moving around stuff now is about the equivalent of one day’s gym-going pre-illness, if I can do it at all. It takes a looooong time to recover from a cold or flu.

I am better than I was. I have better days, weeks and months. I have fewer periods of being completely bed-bound or house-bound. But I am not recovered. Even when I say I’m feeling great today.

To quote the article linked at the top, “Here’s a suggestion, dear researchers. Why not go back and ask those patients if they can now do what they did before they were ill”.

6 thoughts on “Someone at the M.E. Association said something accurate and wonderful about the PACE trial

    • I got to excited when I saw that article. I usually avoid like the plague anything related to the PACE trial cause it makes me all ragey, but I’m glad I read that one. I’ve been trying to articulate a post on the topic of recovery vs feeling ever so slightly better, and this was a good catalyst for that to get written :-)

  1. Brilliant read. I too tend to step away from PACE related pieces but this article was a fantastic read. Like you, I focus on what I can do, not on what I can’t and my line to people when they ask how I am is “body is still the same but the mind is good”. It used to rattle me when my husband threw “she is fine” about, because immediately this was followed up by people saying to me “so you’re better” or “you’re getting better”. I now have him well trained. LOL.

  2. I can’t find the link right now but I read an interesting paper a while back by someone who asked more detailed questions of patients classed as being recovered and discovered they were still symptomatic every day, just no longer having to go back to bed during the day. Really not the same thing as being cured.

  3. Pingback: Fluctuation, perception and more PACE trial ridiculousness | Momentary Solutions

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