How to explain to the ill informed that GET will make you worse?

[anniekim]

I've just had an incredibly frustrating and I confess upsetting phone call with somebody. And it would be good to get some advice from someone with M.E about it. I do go to church, but being housebound the past year I haven't been able to. People from my church do occasionally visit. THey've got a little rota going on, meaning someone should visit at least every month (although usually works out every two to three) I appreciate this very much. I just spoke to one guy though from this group on the phone. When he came to see me a year ago, he kept saying you are moving around your flat, you will get deconditioned. I tried to explain that I moved as much I could, but I had to pace my exertion because of PEM.

Well, I spoke to him on the phone today for the first time in a year and he kindly asked how I was. I said no real improvements unfortunately and i've been housebound now for a year. He immediately said you are walking around you flat, you will be deconditioned which is not going to make you feel well. I tried to explain again about PEM and if I could do more I would. I couldn't help but feel he was suggesting that the reason I was still housebound is because of deconditioning. I probed him a bit and he shared that he had a 'M.E type thing' (his words) for three months. Turns out he had a nasty virus and then got post viral fatigue. After three months, his work (he was a policeman) sent him to a rehabilitation unit and put him on a graded exercise therapy programme. He regained full health in two weeks. But he shared how he was scared to try it, by now I'm inwardly groaning. I tried to tactfully explain that certain fatigue conditions such as from post viral fatigue can respond to graded exercise, but it's not the same as M.E and GET can make people with M.E much worse.

He then also shared that he saw a dvd in his office (I don't know what he does now, but after I asked him he said he works in a place that also houses a physical health psychology dept, whatever that is. I thought oh dear) that advertised a inpatient programme in London for people with M.E, that I think again was graded exercise and gave testimonials how people had fully recovered. Again I tried to explain that for many people graded exercise makes them worse and unfortunately people get diagnosed with CFS/M.E when in fact they have fatigue caused by other conditions which may well respond to GET, but neuro immune M.E doesn't. And also unfortunately some psychologists and psychiatrists have a skewed and inaccurate view of the causes and treatment of M.E I knew he wasn't buying it and I felt he thought I was being terribly negative which is frustrates me as it feels unfair. (i've had M.e now for 13 years, but I still get upset when in these situations, haven't learned!)

I'm partly writing to offload and partly to ask if anyone has any suggestions of any good responses to say in a situation like this? Perhaps some scientific jargon that explains why symptoms in M.e get worse after exertion? I've read about an immune response, metabolic defect, I'm not clear though. Thanks for reading and many thanks in advance

 

[Sasha]

I think you said everything that I would - perhaps he will think about what you said now that the conversation is over. I think you responded very well.

The study by the Lights (with the shocking graph) is a good one to show people what goes on up to two days after exertion in proper ME - I can never handily find the link but I think if I were dealing with someone who persistently didn't get it I'd show them a copy of that graph.

I hope you will only have to deal with him once a year, though! It is terribly frustrating to have a conversation like that and if I find that someone just will not get it after I've explained it more than twice, I cut them out of my life if at all possible.

 

[Hope123]

There's a great series written by Jennie Spotila for the CFIDS Association that talks about PEM. Part 3 talks about why it isn't deconditioning or fear of movement ant has scientific references if your audience is so inclined. It's not long but each part is short so 4 parts total.

If they still don't try to understand after reading this, then consider getting them out of your life as possible.

http://www.cfids.org/cfidslink/2010/pem-series.pdf

 

[maddietod]

It might be useful, while showing the graph Sasha mentions, to say that PEM is a defining characteristic of ME. That this is such a strange thing to have happen, that it distinguishes ME from other illnesses that present with exhaustion. This way of explaining has been very useful to me, here in the US, where the name chronic fatigue syndrome just makes people think I'm complaining.

 

[WillowJ]

You can also explain that, when properly diagnosed, ME/CFS has a pathological and abnormally strong and lengthy oxidative stress (explain that this is free radical damage in the cells) in response to exertion, even minimal exertion. Also there is a pathological, and rather severe, drop in cardiopulmonary capacity, which is thought to derive from an immune response. These are biological components of PEM. Yves Jammes has a paper with a nifty graph showing the striking difference between sedentary (deconditioned) controls and the diseased CFS group.

Also, ME/CFS has channelopathy and neuromuscular dysfunction, which is demonstrated by the work of Yves Jammes and Tiziana Pietrangelo (and also the gene studies, including one by the CDC, Whistler et al., always indicate channelopathy). This pathology is similar to that of myasthenia gravis, where continued use of muscles makes the muscles progressively weaker. Some of the experiments in the PEM series cited above demonstrate this.

Like Hope said, if he cannot understand even after it's been explained, start by telling him thanks very much for caring enough to try to help, but you are unable to discuss therapies with him (since you have a different disease from the one he has in mind). If that doesn't produce a (preferably gracious) consent to respect your wishes, consider not returning phone calls or whatever you need to do to protect yourself.

 

[anniekim]

Thanks everybody for all the fantastic replies. As I explained, this is not a person i know very well or have much to do with, so it won't have too much of an effect on my life if he doesn't get it. i have given my response, can only hope it gave him pause for thought, but didn't get the impression it did. just after all these years, I still get upset when I have such conversations, probably need to work on getting a thicker skin. Thankfully these frustrating conversations don't happen too often.

 

[fla]

Here's a good graph illustrating PEM.

 

[Dainty]

just after all these years, I still get upset when I have such conversations, probably need to work on getting a thicker skin. Thankfully these frustrating conversations don't happen too often.

You know, I still haven't figured out the whole "thicker skin" thing yet. These sorts of conversations are always difficult, and it sounds like you handled it very well. Thanks for working to inform people - every bit helps. If he didn't listen to you it's still possible that because of you he'll listen to someone else, or will think on your words the next time ME / CFS makes the news.

 

[Sasha]

You know, I still haven't figured out the whole "thicker skin" thing yet. These sorts of conversations are always difficult, and it sounds like you handled it very well. Thanks for working to inform people - every bit helps. If he didn't listen to you it's still possible that because of you he'll listen to someone else, or will think on your words the next time ME / CFS makes the news.

I agree - I find these conversations frustrating and anger-provoking every time I have one and I think that it is because they remind that that, because of how we've been mistreated by lack of govt funding, many people in society hold these same false beliefs about me. That's not a very pleasant thing to be reminded of.

We can just do our best! And I think you did a really good job, anniekim!

 

[Bob]

This is refreshing, and very helpful, a poster from the The Young ME Sufferers Trust (Tymes Trust) in the UK, which is headed by Jane Colby:
http://1.bp.blogspot.com/-rUdOZoZKsCs/Td1Yz1CGiCI/AAAAAAAACtg/TxcowfyPoqM/s1600/stop+GET+and+CBT.jpg
http://www.tymestrust.org/pdfs/ttstopposter.pdf

Here's their text on the subject:
http://www.tymestrust.org/pdfs/vision2011-1insert.pdf

Here's the Tymes Trust's website:
http://www.tymestrust.org/

And here's a letter that Jane Colby sent to the Guardian, re the PACE Trial:
http://www.guardian.co.uk/society/2011/feb/24/truth-about-exercise-and-therapy/print

 

[justy]

Thanks Bob for posting the links - very informative and concise.

 

[Bob]

If it's any help, this is what the PACE Trial proved:

GET does not cure ME patients.

GET only helps some patients.

After a whole year of putting GET into practise, patients only improve by a maximum of about 10% (on the Chalder fatigue scale), and we do not know if this improvement is due to the therapy, or due to natural fluctuations in health. The improvement graphs from the PACE Trial suggest that no meaningful further improvements would be seen after further time.

Patients improve more from 'specialist medical care' than from GET.

The PACE Trial proved that GET and CBT are not effective therapies for ME patients.
The best spin that the authors could put on the results is that they are 'moderately effective' treatments, which only help some patients.

So, in summary, GET should only be offered as a tool which may help some patients cope with a chronic illness. It does not help many patients. If a patient doesn't think it will benefit them then there is no point in them using that tool.

But this is all using the PACE Trial as evidence, which used a dubious selection criteria, and did not select any severely ill patients, who do not benefit at all from psychological interventions, as proven by the FINE Trial.

---

One of the main symptoms of ME is post-exertional-malaise, and so to suggest that forced exercise is helpful, for ME, is both ignorant and dangerous.
Exercise can damage ME patients due to the nature of the disease. (This is the bit that I would like to phrase better - If i come across a better way of phrasing it, then I'll post it here.)

 

[anniekim]

Thanks for the further replies, helpful links and encouragement, all very appreciated

 

[Snow Leopard]

Here is one of the longitudinal studies on physical activity mentioned above:
http://www.cfids-cab.org/rc/Schmaling.pdf
They concluded 'These data do not support models that posit associations between CF and deconditioning.'

 

[Tammie]

One explanation I that have used and people have understood is to compare the mitochondria to batteries (they act in each cell sort of like a battery does)..

..I tell them that in normal people or even people with other fatiguing illnesses, the mitochondria in each cell acts like a rechargeable battery that is continuously being charged (it does this by recycling ATP to ADP and back to ATP, thus creating energy for the cell to work)

I then tell them that in ME/CFS, our "batteries" are sometimes not of the rechargeable type, and sometimes they do "recharge" but they do so much more slowly than normal and they require absolute rest in order to do so....and that because of this difference it is entirely possible for us to have "dead batteries" (ones that have used up all of their energy) and to need to (in essence) "replace" them before the cells can work again

I say that because we have so many cells in our bodies, it is possible that some will be "dead" and some functioning at any given time, and that if there are enough cells in any part or system of the body that have run out of energy, then that part or system is simply not going to work no matter how badly we want it to....we can no more will ourselves to function (or use exercise to feel better) than someone could will a car with a dead battery to work

I know this is not the world's best explanation and it is greatly simplified, but it explains how the body can work one minute and then not the next...and how this affects absolutely everything including physical and cognitive function...and it is based on what some CFS experts have written re the mitochondria and how they work....and it's something that everyone can understand - people get that non-rechargeable batteries eventually die, and that we can't make somethign with a dead battery work just because we want it to, and they get that it has nothing to do with will power, laziness, fear, etc