Is it About Getting Better or NOT Getting Worse?

To outline the current backdrop to this post, there’s much heated debate for and against the reliability/validity of the PACE trial methodology. The depth and details of this are beyond the scope of this blog post. The PACE Trial was a large study into CFS (ME) comparing standard medical care, Cognitive Behaviour Therapy, Graded Exercise Therapy and a form of Pacing activity management.

This blog does cover:

PACE –  little difference in treatments groups at follow-up

I was distressed by the Telegraph‘s frontpage interpretation of a recent paper which they read as meaning CFS wasn’t chronic and could be overcome by positive thinking and exercise. This type of misrepresentation undermines public support and fundraising for biomedical research and leads to further discrimination for severely ill people.

However, if I was writing a headline from this paper it would have been:

“There was little evidence of differences in outcomes between the randomised treatment groups at long-term follow-up”

Graph

The authors suggest “However, the finding that roughly a quarter and a third of the participants originally allocated to APT and SMC respectively had received a therapeutically adequate amount (ten or more sessions) of CBT or GET after the trial final trial outcome, makes it possible that this additional treatment was important in improving the long-term outcome for these patients.” but analysis of this information shows:

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My cost-benefit risk assessment for Graded Exercise from this is that it’s not value for risk, given that all conditions ended up the same and many patients say it makes them worse.

The outcome that there was little difference between the treatment groups is probably surprising to most people. Proponents of CBT or Graded Exercise would have expected those to be more beneficial. Based on feedback from patients I expected Pacing to be a clear winner. Of course research design flaws/bias could have clouded a true result in favour of Pacing. Any research involving fallible researchers and participants (ie all research!) can go wrong in any number of ways. As well as the problems identified in this case, participants aren’t completely under researchers’ control and some of them may have done GET more like Pacing and the Adaptive Pacing protocol may not be how we would intuitively pace etc.

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Do Recovery Techniques Matter?

Anyway, this outcome got me thinking more broadly beyond the specifics of PACE. I don’t know if everyone is like me but I tend to focus on what I can do to get better. You can see on this blog the types of things I’ve tried including pacing, using a heart rate monitor, nutritional supplements, POTS medication, meditation, herbal remedies and more. It feels more positive to have hope that this new thing will make me feel better, even if it’s just 5% those 5% add up (BTW I don’t have a deficit of thinking positively The Daily Telegraph!).

This is casual speculation, and I’m not about to throw out everything I’m currently using, but it set me pondering how often the various techniques for getting better are an illusion? ME fluctuates a lot and it’s easy to falsely attribute cause and effect when events are mostly random. If you’re about to improve anyway and start something new it will appear like the new thing has done it.

My experience with ME has been more fluctuating than most I think. Around 10 years ago I was 95% again, able to work full-time hours and socialise. It wasn’t a full recovery as I often felt crap while working but I could carry on. I kept a very vague eye on Pacing planning my diary, but I didn’t get obvious payback with an average lifestyle. For example, I remember going to a festival, drinking, staying out late and walking several miles home in the early hours and I don’t remember PEM afterwards (at least I didn’t lose all my youth to ME like lots of people have).

This experience gives me a realistic expectation that I can get that well again. I often try to work out how I improved before to copy and repeat. It is mostly a mystery though. I’ve never been offered Graded Exercise or CBT. I was a participant in a research study though. I think it’s the study in this paper and I was in the Education and Support group. In my memory it was mostly talking between ourselves (as a form of control group to the CBT group) so I don’t expect it had a major impact in itself. Reading the protocol there were specific talks from therapists and then “The therapists allowed free discussion on the topics introduced and responded to direct questions in a non-directive style.” (see pages 79-80 for a comparison of the CBT condition with the one I was in).

[Incidentally this was the sort of control group needed in the PACE trial in my opinion as it showed the non-specific effects of group therapy

Conclusions: Group CBT did not achieve the expected change in the primary outcome measure as a significant number did not achieve scores within the normal range post-intervention. The treatment did not return a significant number of subjects to within the normal range on this domain; however, significant improvements were evident in some areas. Group CBT was effective in treating symptoms of fatigue, mood and physical fitness in CFS/ME. It was found to be as effective as trials using individual therapy in these domains. However, it did not bring about improvement in cognitive function or quality of life. There was also evidence of improvement in the EAS group [which I was in], which indicates that there is limited value in the non-specific effects of therapy.“]

Looking at the protocol now there was some useful content such as monitoring heart rate, which I thought I came across last year not over a decade before! Anyway, the only tip I remembered was that pwme can tolerate Gin and Tonic better than other alcohol, so I don’t think participating in this trial is what got me almost-well!

All I did was a very relaxed, intuitive form of pacing and took a small dose of amitriptyline to regulate sleep and I gradually improved. I ate badly including dairy and gluten and didn’t take regular supplements. One theory I have is because I ate quite a lot of convenience food I’d have eaten plenty of salt it may have put my undiagnosed POTS into remission (making it easier to recover from ME as well), but I don’t know if that had any effect. With improvement I naturally increased activity (as almost everyone would!) but the increase in activity did not precede the improvements.

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Preventing Relapse

What I’m trying to get to, is that it may not be the techniques we use to get well that matters so much. In my experience setbacks have been much more important than improvements. When you improve it usually happens gradually with opportunity to tweak as you go along (unless you’re lucky enough to have access to something game changing like rituximab). Setbacks hit suddenly and can undo everything overnight. All my major setbacks have been followed viruses and over 4 years several significant backward steps forced me to work fewer hours, drop life outside of work until in 2012 I ended up at bedbound level after a simple viral tonsillitis. This was incredibly hard to process after having rebuilt my life again. Life with ME brings to mind this famous poem

IF
If you can keep your head when all about you
    Are losing theirs and blaming it on you,
If you can trust yourself when all men doubt you,
    But make allowance for their doubting too;
If you can wait and not be tired by waiting,
    Or being lied about, don’t deal in lies,
If you can dream—and not make dreams your master;
    If you can think—and not make thoughts your aim;
If you can meet with Triumph and Disaster
    And treat those two impostors just the same;
If you can bear to hear the truth you’ve spoken
    Twisted by knaves to make a trap for fools,
Or watch the things you gave your life to, broken,
    And stoop and build ’em up with worn-out tools:
If you can force your heart and nerve and sinew
    To serve your turn long after they are gone,
And so hold on when there is nothing in you
    Except the Will which says to them: ‘Hold on!’
If neither foes nor loving friends can hurt you,
    If all men count with you, but none too much;
If you can fill the unforgiving minute
    With sixty seconds’ worth of distance run,
Yours is the Earth and everything that’s in it,
    And—which is more—” you’ll survive ME my son!
Rudyard Kipling

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Tips for Preventing Relapse

I wish I knew simple tips for preventing relapse. That would be very helpful. The most effective actions are probably extreme and impractical. We could live away from other people and not catch any viruses but that isn’t possible if you need other people because you’re ill. I’ve been virtually housebound for 3 years, rarely venturing into public spaces, but I still get viruses from my partner and Homesharer. We can rest completely but at some point deconditioning does become a problem for other medical conditions (it’s not the cause of ME) and few people are patient enough to do nothing when they feel well.

These are more achievable ideas that may help. I’m adding suggestions below from your comments.

Viruses

  • In public places imagine you’re trying to hide your fingerprints from detectives, so don’t touch toilet doors etc with bare hands

  • Use hand gels and antiviral sprays when you go out

  • Wash hands and face with hot water and soap, concentrating on backs backs of hands and thumbs, when you return home

  • Seriously weigh up whether to get the flu jab (I’ve decided not to but it may be right for you, see here)

  • Find a way to effectively communicate to friends and family how badly viruses affect you even if their cold is “just a sniffle”

  • If you’ve been around people who are ill, change your top

  • Use Thieves oil in diffusers and soaps (essential oils aren’t well researched but studies indicate cinnamon, thyme, clove, rosemary, peppermint, eucalyptus, lemonbalm and tea tree are useful for infections)

  • Gargle with a few drops of organic tea tree or oregano oil in water when a sore throat starts

  • See if you can access anti-virals. I occasionally take the supplement inosine (the active ingredient in Imunovir) if I feel I’m fighting something, but I’m a bit nervous of side effects

  • Take vitamin C and zinc it may help fight a virus

  • Sometimes in winter open all the doors and windows for 20 minutes to change the air

  • “NeilMed Sinus Rinse – wash those bugs right out before they get a chance to take hold”

Exertion

Aside from viruses, overdoing it seems to be another main cause of setbacks. I’ve mentioned some of these tips before:

  • Stay under your estimated anaerobic threshold using a heart rate monitor

  • Establish a baseline of activity you can maintain most days, perhaps using a pedometer

  • Hold back energy rather than doing something until you’re tired or ill

  • Plan to rest before and after activities

  • En corporate meditation around activity

Stress

People sometimes talk about a time of stress before a relapse (and stress also compromises your immune system), this may also be to do with an increased heart rate rather than a negative interpretation of events.

  • Find a relaxation technique that suits you

  • Explore something like Modern Stoicism which helps you process adversity

  • Develop awareness of what stresses you out and find ways to avoid, if appropriate

  • Allocate spoons of energy to things you enjoy, not just work or chores

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Conclusion

Preventing relapse as the focus of studies seems to be under researched. In Google Scholar I searched for terms such as “CFS relapse” and “CFS setback” in study titles and didn’t get any results. This seems to be a serious omission in a condition that is often experienced as “one step forward two steps back”.

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14 thoughts on “Is it About Getting Better or NOT Getting Worse?

  1. Excellent post… and I totally relate to your point about set-backs being the things that most drastically alter our outcomes.

    Healing change if it happens is slow, and in my view it is often difficult to say exactly what was “the thing” that made the difference to any individual. This is because people often attribute their recovery to what ever therapy they happened to be trying a the time – and that may or may not be related to the outcome!

    As you say however, damage to health however can happen in a single unfortunate incident. This is much easier for patients to acknowledge. I know of a few in my own illness time line. Like you one of those was a virus, another was after pushing myself (ever so slightly) to do extra fun things, when I probably should have listened to those little warning signs my body was giving me.

    Researchers all really need to be very aware of the risks patients take in trying anything new. Certainly it seems incredible that PACE authors did not encounter these relapses… but then I guess the point is, they were not looking for them.

    Liked by 1 person

    • Hi Sally. Yes I think a key point is researchers not looking for relapse. There are plenty of patient blogs and advocacy sites with anecdotal information and tips about relapse (because nearly everyone experiences setbacks with ME). When I tried to find studies focused on relapse (rather than as a side effect or general discussion in other research) I didn’t find anything. This is hard to accept so perhaps I didn’t use the right search terms?

      Liked by 1 person

  2. Tips for avoiding viruses. I gargle with a few drops of tea tree oil in water at the first sign of sore throat and take extra vitamin C. Once a week in winter when we don’t have windows and doors open I switch off the heating, put my coat on, open all doors and windows in the house and get under the duvet for 20 minutes so that the house is ventilated and germs blow away. This was a tip from a doctor.
    A great post!
    I first recovered in a year from ME with pacing, diet and supplements. I was well and active for ten years. The the ME came back. I used the same techniques as before, but gradually got worse until I was completely bed bound. I have now had ME this time for 15 years despite trying everything! At my best walking a bit around the house and being up for three hours between rests. But I can be out or go on holiday with rests in the car and use mobility scooter. At my worst unable to even stand.
    So like you I know that recovery is possible, but it’s a mystery as to why the body recovers at one time and not at another!
    I like what the OHC says about relapse, that how you react to it emotionally affects how bad the relapse is. Also that it’s impossible to avoid these setbacks. It’s not our fault! 😄

    Liked by 1 person

    • Thanks for extra tips, I’ll add them in.
      The unpredictability of ME requires extreme psychological endurance doesn’t it? I believe the mysteries are solvable though if clever people look in the right places…

      Like

  3. Really useful post re relapses, thank you.
    Mine too are related to viruses – it all feels out of my control and it isn’t that I feel I have actually succumbed to the virus quite often, but I feel exhausted from my body battling it for days on end. The best thing I have found to minimise the impact has been Oil of Oregano. I use it the minute I feel any kind of sore throat (2 drops 3 times a day). It definitely helps as it is an anti viral.
    Thank you so much for all your tips, it so good to share info and support.

    Liked by 1 person

  4. Great post! Yep, totally, avoiding getting worse is key. And it frustrates me that there is so little research interest in looking at the natural course of ME/CFS, POTS & co – I think there’s a lot to be learned from what exacerbates us and what helps and how that changes over time. For me exertion is far and away the major contributor, so pacing and really high-quality rest is my lifeline. Surrounding any kind of exertion with bucketloads of meditation helps mitigate the damage for me. If I get an infection I do even more meditation/rest than usual to give my immune system a chance. Some more virus-avoiding tools: NeilMed Sinus Rinse – wash those bugs right out before they get a chance to take hold. Particularly handy back in the days when I was out and about, as I would do it more often if I’d been around kids/someone sniffly/lots of people. Wash hands properly (google NHS handwashing) – I used to work in a hospital so this becomes automatic, but “normal” handwashing misses a lot. The microbiologists used to tell us that everyone misses the backs of their hands and thumbs! And if you’ve been around germy peeps, change your top when you get home, ‘cos your hands and front are where most of the germs end up. (Hence the aprons in hospitals.)

    Liked by 1 person

    • Yes. My grandad was a GP, he died before I was born, but something I inherited from him was “look after the backs of your hands and the fronts look after themselves” ie concentrate on washing the backs of your hands with the fronts.

      Good tips I’ll add in when my eyes are doing better. Thanks.

      Like

  5. I stumbled on your blog via Twitter. I had two year long bouts of ME in the late 80s and mid 90s.
    Enlightened doctors in GP practice and at work gave me the diagnosis, which was lucky in those days. However therapies and assistance were minimal.

    But I do remember vividly that the key tool which brought me to a 90% recovery was a book called, I think, Recovering from Viral Fatigue by Dr Darryl Ho Yen. It involved a programme of keeping a diary of your energy levels, and staying within them to gradually build reserves. It involved self discipline and persistence and was a hard road. But it helped, I am sure of that. I internalised the way of thinking and live by it to this day. Overdoing physical activity resulted only in relapse.

    I came to the conclusion that less than optimal hormone regulation has been a big factor for me. But a virus was the initial trigger.

    Seeing your comment about gin and tonic and wine made me smile.
    I had forgotten that strange quirk and possibly significant chemical marker.

    A nasty little virus has recently made me wake up for 10 days to see the old ME face in the mirror for the first time in 20 years. The dark circles under the eyes. The cognitive problems, exhaustion etc. Alarming. Then I drank a glass of wine, and realised later that it hadn’t caused the old reaction. Then my husband woke up with the same face. Just the norovirus after all. Now on the mend, but a salutory reminder to continue to take care while trying not to let the shadow of ME inhibit everything.

    Life has been very different since my illness, but it is probably just as fulfilling and active and rewarding as it would otherwise have been.

    So I owe Dr Ho Yen a huge debt of gratitude.

    Final thought – another quirk was an ability to cope with strip lighting in shops which quickly brought on faintness and dizziness, and particularly in M&S. I have since learnt that they have their own specially designed !ighting. Wierd.

    Good luck.

    Liked by 1 person

    • Glad to hear you recovered. I imagine everyone who’s had ME panics when they get a virus.
      It sounds like the advice you read was staying in your energy envelope? This is a popular idea with pwme.
      Shop lighting can trigger migraines for me. If I go into town it’s with a pop star disguise of a large fedora hat and shades!

      Like

  6. Additional information on/context for the walking test results (from the full text):

    The abstract doesn’t put the walking test results in context.

    In the full text, the authors say:

    “The ISWT, used as a physical performance measure, has normative reference data described by Taylor and colleagues.7 Their sample of
    122 healthy subjects (mixed gender and age) walked a mean of 67 × 10-m shuttles.”

    Contrast this figure of 67 with the results achieved:

    The CBT group started at: 24.3. After six months, were at 28.5 and at
    12 months were 28.9.

    The changes are thus minimal compared to normal functioning.

    The full text also refers to outliers being excluded:

    ________________________________

    “Five clear outlying observations were omitted from the analysis of shuttles walked. Three were very low values (0 or 2) and two were amongst the highest values (60 and 75), but were from a patient with a low baseline score (9). If these outliers were retained, the SEs increased and difference between CBT and SMC was no longer statistically significant (p = 0.17).”

    Whatever about excluding the low values, I question excluding the values of 60 and 75 which are the type of scores one sees in the normal population. It is not widely accepted that nobody with CFS ever gets back to normal functioning (I don’t even think the authors believe this either). It is understandable to exclude scores that don’t look like they represent the real values, but there is no evidence that the scores of 60 and 75 are anything other than the real, or valid, values.

    Also, the wording, “two were amongst the highest values”, suggests that there were other high values but these weren’t excluded.

    Liked by 1 person

  7. Pingback: Contribute to NIH Research Strategy | Tips for ME

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