ME/CFS: It's so much more than just tired

[kath_ballantyne]

Here are a couple of in depth articles on the PACE Trial in the UK. I have a lot I want to say about it but I just can't find the words. I'm angry about it. Really angry and it makes me feel sick the way this shit is being mishandled and the ridiculous stories that were printed in Newspapers

Comments

[kath_ballantyne]

I was a little pissed off at the trial and may not have been very clear with what I was trying to say.

GET and even CBT can be useful for some people. They can make a huge difference. Deconditioning certainly plays a part in things.

I just don't think they should be the only, or even the first response without finding out what damage they can cause and what people specifically will benefit from it most.

I think the biggest part of the problem with finding treatments that work is that we don't know what causes it and also the fact that there are probably a bunch of different causes that are ending up with what we are calling CFS/ME

I'm annoyed that other treatments are being ignored and that quite a few of the scientists involved in this trial and the media are saying that there is no CFS and that people are just deconditioned and fear avoidance is the only thing stopping them functioning at healthy levels.

I think these treatments should definitely be available to people. It just needs to be acknowledged that they work well for some people with CFS and not for others.
That doesn't mean you're not trying hard enough, you know.

I'm sure graded exercise can make a big difference for some. It was just that on average, in this test, it didn't make the big difference they expected.

It possibly did help a lot for some people and that would mean that others made no progress at all or went backward for their average to be so low.

There seems to be a group of people who have post viral CFS that recover within around 2 years. My friend Mandi did that too. I've heard a lot of people who do.
My Doctor told me that as I hadn't recovered after 2 years (this was about 4 years in) that I was probably in this for the long haul.

Research needs to be done in to the differences between those that tend to recover in a couple of years and those that don't. If different treatments are needed for the two groups or if they're even the same condition.

They didn't differentiate in the study. All they did was pick people who had fatigue for more than 6 months and who weren't massively sick at the time. This treatment is still being pushed on those that are massively ill even though we have no idea how it affects them.

I didn't mean to suggest that it couldn't be an effective treatment for some people. I'll change my wording.

I think though most people with no energy most of the time take advantage of having slightly more. I mean when I can I do stuff. If I'm feeling a bit better I get some housework done or some garden stuff or I go for a walk. unfortunately after doing this for a few days to a week I usually end up crashing. And if I keep pushing through like they are suggesting you should I crash harder.

I've tried at quite a few points since I've been ill to keep going and I've always ended up really sick again. I'm still dealing with the pain flare from pushing through this time last year to go for a walk every day. They weren't big walks.
I've even been really good with pacing. Tried doing a bit less than I was able to do and just doing that every day and I still ended up in a flare.

I just think it needs to be acknowledged that while this can really help some people it just doesn't work for everyone and it's not the patient's fault that it isn't working.
I can see people being denied any other treatments and being kicked off benefits because there is a cure for this etc.

Specialist medical treatment to deal with mood disorders, sleep problems and pain issues helped the most people the most and yet that's not even being offered.

But yeah, I'm really not very good with words. Basically I meant that sure GET and CBT should be offered as options but not as the cure for everyone and they should be offered along side things like SMC. Vitamin and mineral deficiencies should be tested for in all cases (I've still not been able to get them to test my vit B, D etc levels or do a full thyroid work up) and other treatment options should be looked in to.

[blamebrampton]

I agree fully. From what I have seen of my own illness against that of some of my friends, there do seem to be two distinct patterns. On the one hand there's one that seems to often be a post-viral thing, which is the type I had, and which literally felt like my body saying, 'You know what? We need some time off.' I liken it to when I shattered my foot, it took a lot longer than expected to get over both things, but there was in each case a point at which I could say 'I am now getting better.'

It's not the same for several of my friends including you, where the disease is more akin to arthritis. There is no clear-cut point of I'm getting better, but there are better and worse management strategies. The good ones make a world of difference, the bad ones are at best frustrating and at worst debilitating. For that style of CFS, exercise is something that needs to be rationed carefully because, as you say, enthusiasm only leads to damage.

I find it astonishing that vitamin and mineral tests aren't being done, as back in the early 90s vitamin levels were one of the first things checked, which was why I was given Vitamin B shots at the time. They really helped, as I was deficient. The test is not very expensive and the treatment is cheap. Surely it's worth a throw of the dice even if it isn't in the current 'theory'.

Similarly, pain management makes a world of difference in quality of life, even if you choose not to take the medications that are offered. I don't think I've ever gone more than one click on a morphine or pethedine clicky thingywhatsit, and I habitually fail to make it through more than a quarter of a pack of Panedeine Forte whenever I break anything, but Oh! The comfort there was in knowing there was an option!