Hi Bob,
I wanted to address the comments you made earlier, but have not had the chance.
I'm mot sure that I understand this.
Not quite a name change, but an association in the UK ..... that ME is really CFS........ has made a huge difference. It has essentially denied that persons who were once regarded as suffering from non paralytic polio or atypical poliomyelitis with noted and demonstratable changes to their central nervous system - (which in turn can effect an individuals ability to maintain regular homeostatsis necessary to stay alive) - was CFS: a fatiguing illness with no known cause, which could be ''fixed' with graded exercise (which I might add, is contra indicated for ME patients, in historic ME literature).
So I dont think you can dismiss the significance of the impact any changes - to name or otherwise, is going to have here.
ISO, I agree with you. I was purely referring to the way the NHS has recently changed how they approach ME/CFS. I might be wrong about this, but I think that a few years ago, the NHS only treated 'CFS', and did not recognise 'ME'. And then about a couple of years ago, they officially changed the name they use from 'CFS' to 'CFS/ME'. (I might be wrong about this, but this is what I remember happening.) So I was only referring to this name change from 'CFS' to 'CFS/ME' which I believe did not have an immediate significant impact on the way we are treated, as the only treatment available to us still is GET or CBT. Over the longer term, this name change might prove to be helpful.
But, yes, I agree with you that it was appalling that 'ME' was hijacked by psychologists and basically erased as a disease, and then renamed 'CFS'.
Certainly, the term CFS was always intended to be a temporary one as I understand it.
I think this idea is over due and needs exploring in relation to CFS, but unfortunately you will not be able to successfully claim the term ME, as it already belongs to a distinct illness - identified and supported by medical fact. It is not available to be used and or applied towards CCC CFS or any other definition of CFS, or to any other illness, because it has already been assigned elsewhere, as acknowledged by the WHO in 1969.
An attempt to do otherwise, will never sit well with the ME community that is intent on having the medical historical literature acknowledged once again, and preserved.
This is exactly the sort of thing that I wanted to discuss on the other thread.
In your mind, you might be very certain what ME is. You might define it as a speicific historical illness, as defined by Ramsay, and as acknowledged by the WHO (I'm not sure how you define it.) But it seems to me that almost
everyone on this forum has their own individual interpretation of what the terms 'CFS' and 'ME' represent, and I wanted to gain a fuller understanding of this.
You say that the term 'ME' is not available to be applied to CCC, 'fact'. But I don't think that everyone agrees with that. Things have evolved over the years, and the term 'ME' now seems to be used flexibly, at least in a practical and political sense. In my experience, most people with ME haven't even heard of Ramsay or the historical outbreaks, if that is what you are referring to when you say that the term 'ME' has a medical evidence base, and is a specific disease.
I'm not saying that you are wrong about your interpretation of what ME is, but I'm just pointing out that there are so many interpretations that everyone seems to have a different opinion about the subject.
You say that the name 'ME' is not available to be used for other uses, 'fact', but I don't entirely agree with that. I think it
will be available if the authorities decide it is, in practical or political terms. And the authorities' political decisions have a direct impact on our disease, whatever the historical medical evidence. The term 'ME' is usually used loosely now, and I think there needs to be a conversation in our community about what definitions we find acceptable to be used in a practical sense, such as for research. But also which definitions we find acceptable to be used in a clinical sense. Even if medical fact defines 'ME' as a very specific disease, politics can change the meaning, and I think that our community needs to have a conversation about this.
SOC, I'm not saying that you are right or wrong in anything you've said... I'm just trying to point out the different perspectives and create a discussion about the subject.
THE OTHER THREAD
If in undertaking the exercise you are engage in, on the other thread, is to achieve some consensus, then in my view, before you can get there - you need to have all the relevant facts/knowledge at your disposal and an understanding and clarity regarding the same.
So if I may make a suggestion - it might be prudent to collate and acknowledge the relevant medical facts on ME, as supported by the medical literature and promoted by world ME authorties, -that is relevant to, and distinguishes ME from, CFS.
If you had a page that did that - I think consensus is more likely not only to be achieved, but to stick. Without that, it seems to me, that you might expend a lot of energy -with an interesting and lively discusion, but not a definitive outcome/and or one that is supported by the whole community (ME advocates).
I am still learning about the historic 'facts' of the disease myself. I noticed on the forum that people often refer to 'ME' or 'CFS' without explaining what their perspective is. And everyone seems to have a different perspective. I've seen these different perspectives cause a lot of severe friction on the forum, just through misunderstanding what other members mean when they use the terms 'CFS' or 'ME'. I find that these misunderstandings of terminology cause more friction than any actual fundamental disagreement of opinions. So I wanted to try to understand these differences, so that we all understand exactly what we mean when we say 'CFS' or 'ME'. We haven't had much clarity about that on the other thread, and maybe that is my fault for not asking the right questions.
Let me give you an example of what I mean. On a discussion thread, somebody said that 'CFS' is not a real illness, and that the term 'CFS' should be scrapped and replaced with 'idiopathic fatigue'. Someone else on that thread had a diagnosis of 'CFS' because their doctor did not use the term 'ME'. So this person saw the other person's opinions to be a direct attack on themselves, and their integrity, because they thought they were being told that they were not really ill, but were just making it up. The 'CFS' patient was
extremely upset about the original comment, and the two members never resolved their differences, because they were unable to understand what the other meant. But actually, they both probably had the exactly the same experience with the disease and they probably both had exactly the same fundamental opinions about what should be done to improve our lives. But instead of working out why they were arguing with each other, they left the thread on unfriendly terms. So the first person had not realised that they had unintentionally insulted the second person, and the second person had no insight into why the first person made such an, apparently, 'insulting' comment.
So really, my thread was an attempt to work through these misunderstandings and difficulties.
You might also like to give consideration to extending an invitation to persons from ME bodies to participate in the exercise (if interested). I dont know whether they would be available but I am sure they would appreciate the invitation and consider it with interest.
I make this suggestion because if this was a consensus building exercise off line, and it was approached professionally, these groups (ie HFME, etc) would (in my view) be identified as a stake holder in this process and thereforebe invited in the hope of achieving a successful outcome.
ISO.
Well that's a great idea; I'd love to have a wider community conversation about the subject, but I don't have the capacity to even attempt to organise such a thing.
Really, I was intending the thread to be a casual conversation about understanding each other's perspectives, opinions, and points of view, so that 1) we can avoid unnecessary friction on the forums, and 2) we could speak with one voice on the subject when/if advocating for change in the wider ME community, or politically.
But of course I'd love it to be a wider scientific, evidence based, conversation with our entire community.
Not very many people seem to be joining in with the conversation on the other thread though.
Maybe the subject has caused too much bitterness and disharmony for people in the past.
(Sorry for such a long post... I'm not very good a condensing my text or writing succinctly!)