ETA: While I was posting, oerganix has already put it better and simpler. But since parvofighter's posts went over the top IMO - and I have read through more now and understand better why - I still think I need to explain where I'm coming from. And I really must add that the comments about practicing CBT on forum members, ethical and legal concerns, and deliberately trying to toy with patients, are completely over the top. From where I'm sitting, those comments are absurd. Just absurd, and not worthy of you parvofighter. I can see where you're coming from, and I'm very sorry to have provoked you into that reaction, I have taken the reasonable parts of what you say on board, but your reaction was far too strong in my view.
I would like to express my dismay at a recurring theme from a minority of posters that routinely and disdainfully trivializes ME/CFS symptoms, and encourages patients to ignore and "push through" their symptoms in a variety of contexts.
Parvofighter, I want you to know I'm taking what you say seriously and I will try to take your anger on board and qualify my comments more in future. But I do need to express where I believe this fault line lies, hoping that I can help take the heat out of some of these arguments within the forum community.
I think the clue to these arguments lies in the phrase "ME/CFS".
ME and CFS are very likely separate conditions. In the UK the diagnosis itself is a "waste basket" diagnosis covering a wide range of conditions that aren't understood properly. All of us here presumably have in common one thing in particular: that all we are offered is CBT, and that the genuine nature of our physical illness is cast in doubt. But in the absence of a full scientific understanding of all these conditions, and of conditions like IBS and other ideopathic conditions similar to our own, we just don't know how many different conditions are involved, and how they are related, if at all.
It is entirely likely that there are two, or probably more, completely different conditions lumped together in this wastebasket.
I post on the basis of my experience. I describe
my condition,
my attempts to resolve it, and try to pass on what has been effective for
me. Whether it is relevant to someone reading, is up to them to decide. Where I have mentioned experiences that are different from other people's, someone will be quick to put up another point of view, and that's absolutely fine. The reader can see the alternative angles and get a sense of what is relevant to them.
It's quite clear that some posters here find sunlight can sometimes be helpful (and I too have been through times when it was the reverse), and that other posters find sunlight is very damaging. I think the forum needs to be able to operate on the understanding that there are people here with very difficult realities, but that we are all genuinely trying to pass on what has been helpful to us as individuals.
What works for me may not work for you. And vice versa. That shouldn't need to be a cause for friction, we should be able to discuss those differences in a calm atmosphere and learn from each other.
I don't think my comments about occasionally exposing myself to triggers that I know make me ill ought to be so controversial. It's something I have been trying quite recently and it seems to be helpful at the moment, but it's not something I could have contemplated a year ago. I would never try to push anyone to do anything that was causing extreme discomfort or danger, and I don't think my post reads that way. I said I
sometimes try to do that, as far as I can bear (I should have said, stopping if the discomfort becomes troubling, that was indeed posted in haste, I accept that point) , and I consider my body's response and adapt my strategy accordingly.
Anyone is free to judge for themselves whether that is feasible, and I should have made it clearer that this is not something I do frequently, but something I try occasionally and gently, with caution and self-observation. As you rightly say, it is essential to listen to your own body and not to drive yourself hard. But at the same time, I am merely suggesting that occasionally and carefully confronting those sensitivities when you are able to might be helpfulin the long run. I could be wrong. I am still experimenting but so far this has seemed quite positive in reducing my sensitivities. It is a more subtle approach than I described, I am sorry if I was't clear enough.
If complete 100% avoidance of anything that sets off negative reactions has led to a gradual improvement in your condition and helped you on the road to recovery, then fine, carry on with whatever works for you. If that path has led to increasing levels of sensitivity to more and more triggers, than I want to gently suggest that if it's not going to cause you significant immediate harm then it's sometimes helpful to your body to try to do what you can. This is
not the same thing as chucking patients on a GET treadmill or even the same as gentler approaches like pacing.
It is more about occasional experimentation to check whether your understanding of what is good or bad for you as an individual really does still hold good. As a general policy, extreme measures to avoid harmful triggers remain essential.
Incidentally, for me, unknown organisms living in cloth and fabrics of all kinds cause a severe and painful reaction, such that I have not slept in a bed for 3 years now (but on a leather sofa) and I have improved dramatically in that time. Since it took me 10 years to even realise that this reaction to bedding and clothing was causing my fatigue and poor sleep leading to a range of secondary CFS-like symptoms, and required Dr Myhill's treatments and lots more hard and expensive work to get to the point where I was well enough to spot the subtle differences provoked by those triggers, I can't help wondering whether there is a deeply tragic vicious circle involved with those people who are bed-bound. I know that is a hard thing to suggest and to hear, and it's entirely likely that my condition and experience is a different one to yours, but it is my experience and I pass it on sincerely. Not out of a desire to cause distress but out of a sense of responsibility to share that experience.
As an example, I have been completely off wheat and gluten for several years now, and that and other measures have 90% cleared up my IBS problems. Every once in a while I break my own rule to see what happens, and after many years of wheat abstinence I am now finding that I can tolerate small quantities without adverse effects, indeed there are positives to reintroducing some things in small quantities. I pass that experience on in the hope it will be helpful to some people. Not to everyone, but to some people.
So that is where I'm coming from. However,
I really do take on board that in my haste and enthusiasm, and also sometimes from lack of time to re-check my posts thoroughly, I have sometimes posted too quickly and made a sweeping generalisation. I think it's fair to say that my use of the word "we" was inappropriate there, and that I overuse "we" when "we" are not all the same. I was unintentionally including myself and everyone else in a "we" that probably isn't valid - "we" are a mixture of different conditions. You are right that what I was saying should have perhaps said "some of us". I have done the same thing before elsewhere, and there are a few posts recently that I've thought I wished to clarify what I said, based on people's responses, but in the end it didn't seem a necessary and high priority because, inevitably, other people had already stepped in to give the view from another standpoint.
- "Sunlight is good for me"
- "Sunlight is bad for me"
- "I can now tolerate small amounts"
does not need to be a charged and emotional political argument and you don't have to experience it as an attack on ME patients, who are well able to determine which of the two applies to them, and can decide for themselves which approaches to try.
I make no attempt to force any of my experience on anyone else. I write openly, honestly, and from the heart, based on my experience of 15 wasted years of chronic illness, and in a desire to both learn from others and pass on what I have learned myself.
I will be more careful in future to qualify what I say by making it as clear as I can that this is what works for me and it may not work for everyone. But I don't think that people posting experiences like mine deserve to be attacked for it. It makes me personally very sad to think that I have provoked anger in someone else by what I've said, because that is the last thing I want to do and because I know how self-destructive anger can be - even without an understanding of how stress hormones activate XMRV. That's why I practice meditation as well, increasingly so thanks to helpful suggestions on this forum - which I have tried, and found to be helpful, and so continued.
The forum's a giant buffet, people aren't expected to have the same experience, and we all have to be responsible for taking what is helpful to us and rejecting what isn't.
Perhaps if you are worried that my words or those of others might be dangerous to other vulnerable patients on here, then you are taking too much responsibility for those people in a way that might effectively be rather patronising to them? If you are able to know that the approach I take is definitely a bad idea for you, perhaps they know that as well.
As regards CBT being practiced on this forum, I don't really have a clue what that refers to, but I find it very hard to believe that the claim makes any sense at all. I'd rather draw a veil over that one because I don't know where to begin with that without coming across as insulting.
Can I make one final plea to people who become angered or upset by something they read on this forum? Please, if you have a complaint to make, could you first consider PMing the person(s) concerned and putting your concerns to them, calmly and respectfully of course. If there's anything you want to know about me and my condition and experience, you only have to ask. If you want to make the points you have made, you can do so in PM conversation or otherwise, and I would be more than happy to chat with you parvofighter because I have great respect for the contribution you make and the wealth of information you post here. So please, everyone, if you feel yourself getting riled up, try to address the issue calmly by PM first, then by reporting posts as necessary. I haven't seen any posts reported for moderation that would suggest the problems you are indicating, so it seems as though these concerns are often building up and building up before a sudden release of anger. I think the vast majority of people here would prefer to avoid such friction as it's stressful for all of us and does none of our health any good at all.
I felt this was a serious enough issue to address with a lengthy post, so that's what I've done, but now regretting it - when am I ever going to get chance to work on that Panorama petition I wonder?
If only we could deal with these controversies in a quicker and calmer way, I reckon the rest of our work would be a whole lot more productive. [Sighs...]. Wish I had the talent of someone like oerganix to put these things more succinctly. So let's all try to get on the same page and move forward together - please? I'll do my best, anyway...
