Please post here if you're a medic who thinks CFS is primarily psychological!

[Esther12]

QUOTE=alphahusky;66870]I think I plainly pointed out that "tired" is a very inaccurate way to describe the level of exhaustion most ME/CFS patients experience. [/QUOTE]

I wasn’t trying to describe the level of exhaustion that most CFS/ME patients experience, I was just pointing out that a discussion on a forum like this would be more suitable for tired patients than a live debate. I do not think there’s anything wrong with that.

I That's why you are getting so many negative responses to using the word. Do you not feel it is a bit trivializing of the disease to continually label a symptom as "being tired?" I doubt most cancer patients would sigh with a smile and wave someone off, saying, "Oh, I'm tired today," when asked if they feel like spending the day doing some activity.

I don’t think that there’s anything inherently trivialising about the word ‘tired’, but I do know, and have said, that it can play into the prejudices of others. I think that distorting our behaviour to account for this can end up just creating other prejudices though. To me, it seems best if we just try to communicate honestly and clearly, and didn’t let our use of language be determined by the prejudices of others.

I As the family member of several people who died of cancer, while they have used the word "tired," it's rarely the way they describe how they feel as they get into those last days. More like, "exhausted." And that was my point.

Right – but they do get tired, and acknowledging that does nothing to dismiss the hardship of their experiences.

I I don't know if you said this is our only problem.

I’ve not.

I But you said, "Tired patients" and "often tired," two phrases that are often used to brush us off. Have you no experience with the psychologizers out there? This is a legit question. Perhaps you aren't up on the politics going on here.

I have some experience and knowledge. I understand the politics which underpin people’s reactions – but I do not think they justify these reactions though.

I But I don't use the phrase "tired" often. That's why I said I'd love to be tired. And then I explained why- because tired is not at all how I experience the "fatigue" in this disease. Tired, to me, is a welcome feeling that usually precedes really refreshing sleep, experienced as something that can be easily gotten rid of by some rest. "Tired" just does not describe the feeling of exhaustion we feel. Surely, as a sufferer, you have to agree that "being tired" just is not an accurate description, and that it is a poor descriptor of the level of, okay, "tiredness" that we experience.

I think it’s very difficult to express in words the subjective experience related to CFS. I don’t think ‘exhausted’ really carries much more information than ‘tired’. I don’t think we can expect individual words to do much of the work for us here, and real explanation would require an in-depth conversation and a prolonged examination of all the terms being used, relating them to the experiences of the other side as well as your own.

I You find me trying to describe the depth of the exhaustion we feel, and compairing it to "tiredness," a feeling I think I clearly described as something that can easily be solved by healthy people, insulting? Okay! I was trying to clarify for you why so many were put off by the use of that particular word.

I don’t find it insulting. But I think it was more insulting than anything I said.

I Since I've had this disease for 25 1/2 years, and perhaps have been far more involved in the politics and experienced the deniers of this disease for much longer, I would never use the word "tired," nor would I say, "often tired." I would use the phrase "exhausted" (I don't used "fatigued" either- it trivializes the level of beyond-the-wall, unbelievable physical and mental exhaustion that doesn't leave no matter what steps you take to battle it back).

I understand this. I know that having CFS is difficult, especially when patients are so often poorly treated – but I don’t want to have my behaviour driven by the prejudices of others. I am tired. I’m far less lazy than when I was well, but sometimes I’m lazy, and I don’t want to feel unable to be honest about this just because I’m scared that it will play in to the prejudices of others. I understand if others don’t want to talk in this way, but I don’t think they have any credible reason for attacking me for doing so.

I Perhaps you are feeling like others are too "hung up" on that word. Maybe that's why your post to me is so dismissive.

Certainly, from some of the responses here, some people are too hung up about this word. It’s not (' ')* (although the hilarious reaction of some to the un-starred word rather proves my points about misplaced sensitivities) and even if it were – lets reclaim it!

I could hardly have been clearer. I I would love to be tired, because tired is something that can be gotten rid of by a night of sleep, some rest, eating- even sometimes watching a movie.

I don’t think that being tired can always be so easily resolved.

I I vaguely remember "tired." There is no way in this world that what I experience 24-7, for more than a quarter of a century right now, is anything like "tired." Particularly with my extreme difficulties with sleep. I remember tired as something almost pleasant that preceded sleep.

Tiredness can refer to all sorts – from the pleasant doziness that comes after an enjoyable day as you tuck yourself into bed, to the feeling of your body collapsing as the final stages of starvation take hold. You may associate tiredness with pleasurable memories, but that is not all it can refer to.

I That is quite clearly what I meant. If anyone else is "insulted" by my very, very clear descriptions, I'd be surprised.

I would be to – but I’m often amazed at what some people manage to be insulted by.

I And thank you for updating me on the fact that you are a patient, and that your partner is as well. I do not have the energy to go back and read all these posts. It clarifies for me that I'm speaking with someone who should clearly understand the difference between the entirely wiped out, life destroying "fatigue" we experience, and being "often tired." I was not trying to imply you were dismissing the entire disease as just "being tired." But I was curious. Your response cleared that up for me.

That’s okay. I may have assumed you’d read some of the other posts where I’ve had to discuss this comment – as there have been a few. Sorry if that meant I was too harsh in my reply.

*allusion to a word with negative connotations removed. _mod

 

[Martlet]

Moderator: This thread has gone way off course. Please would you get it back on track as it is generating disquiet and complaints?

 

[Cort]

Closing Thread

This thread has been the source of several complaints.

After looking it over here is my assessment. These discussions inevitably arouse alot of dissension; they generate alot of heat and not alot of light. One wonders if they are worth the trouble; on the other hand, they involve issues that have importance in the outside world.

Several posts have been sullied by put downs and insults. Please stop with the put-downs!

We do not question people's identity here - please do not go trolling for moles - please focus on the issues under discussion.

If the discussion is not anyone's liking or causes them distress please don't engage or view it. There are many topics to view on this forum -please focus on others.

The thread will remain open for now.

 

[MEKoan]

Cort,

There are certain words which do not lose their offensiveness simply because they are in inverted commas! The use of this word cannot be excused to make a point. I can only think the use of this word is meant to work the very edges of provocation. I had actually considered engaging in what I had hoped might be a constructive way in this thread. I had worked very hard to try to maintain an open mind -- not everyone has the same interpersonal skills, the same ability to judge their effect on others. But, Cort, that word leaves no room for interpretation. It is a word used only to push the boundaries of social discourse over the edge. You've been pushed. That word is on your site.

ETA I just want to thank the Admin.s and the moderators for taking a hands off approach of late and allowing the forum members to address and resolve issues like the adults they are. This has been very helpful and much has been resolved and understood on other threads.

This is a different matter.

 

[Cort]

Can we move on from 'tiredness': I assume that is the word?

PEM - I would point out that the problem in CFS as opposed to disorder like anxiety and depression, at least so far as I understand, is the phenomenon of post-exertional malaise which generally has a delayed effect; ie it is often delayed - which is to my knowledge, not found in these other diseases.

Fatigue States Not Illuminating - Sure, CFS patients exhibit all sorts of fatigue states; sometimes they may feel okay, other times they may feel merely 'tired', other times they are exhausted or worse but none of those are particular to CFS; the key for me is the effect that transgressing ones safe activity levels has; - the further one transgresses one boundaries - the more one moves from fatigue to exhausted to (near dead ).

PEM is Illuminating - For me most of my other symptoms (fogginess, fatigue, feeling of unwellness) I kind of vaguely think are probably reminescent of depression or anxiety or whatever - what shocks me out of those thoughts, however, is my bodies reaction to physical activty - the PEM.

So long as the medical community does not focus on PEM we are susceptible to those kinds of tags. Research is now focusing on thrusting patients into that PEM state by exercising them and then doing their measurements and it is working.

It would be very interesting to me to get a proponent of the CBT/GET school to explain PEM or the push/crash phenomena. I don't think they can do it. Bleijenberg does in terms of cytokines and cortisol - he has a physiologically based explanation for it .

 

[MEKoan]

The word is not "tiredness"! I could not possibly feel this outrage over the word "tiredness" no matter how it was used.

There is a gratuitous racial slur on your site. The fact that it is not aimed at anyone does not, for a moment, excuse its use.

 

[Cort]

Cort,

ETA I just want to thank the Admin.s and the moderators for taking a hands off approach of late and allowing the forum members to address and resolve issues like the adults they are. This has been very helpful and much has been resolved and understood on other threads.

I agree - we've actually had some fruitful discussions on this type of topic elsewhere. Lets see if this thread can evolve.

What is the word? We certainly don't permit racial slurs here.

 

[_Kim_]

The word is not "tiredness"! I could not possibly feel this outrage over the word "tiredness" no matter how it was used.

There is a gratuitous racial slur on your site. The fact that it is not aimed at anyone does not, for a moment, excuse its use.

Cort...midway in post #206 you'll find the offensive word. Please edit it.

 

[MEKoan]

Yes, Cort, the light handed moderation has allowed us to grow as a community in a very healthy way. I very much appreciate that.

I can't believe what we delicately call the "n word" did not leap out at everyone. As I said in my initial post, wrapping it in quotation marks does not make it a fitting word to use in this context - that will be argued in a fatigue inducing fashion, I fear - as the point was a huge stretch and could have been made by the poster, who is not unintelligent, in many other ways.

 

[MEKoan]

Thank you Kim!

 

[Esther12]

The word is not "tiredness"! I could not possibly feel this outrage over the word "tiredness" no matter how it was used.

There is a gratuitous racial slur on your site. The fact that it is not aimed at anyone does not, for a moment, excuse its use.

LOL.

Are some of you people really that easily offended? Context doesn't matter to you? The mere shape of the letters is offensive?

edit - If this leads to another drawn out linguistic discussion, it should at least be more interesting than the one on whether 'tired' is offensive regardless of context.

edit 2: I've just re-read. It really is pretty funny that people were so offended by the word-that-cannot-speak-it's-name that they were unable to type it in order to complain about it, thus sounding like they were complaining about the word 'tired' - beautifully but unintentionally mirroring my own absurd comparison.

 

[MEKoan]

Certainly, from some of the responses here, some people are too hung up about this word. It’s not ‘n*****’, (although the hilarious reaction of some to the un-starred word rather proves my points about misplaced sensitivities) and even if it were – lets reclaim it!

Esther,

Well then, I suppose it's not a bad thing that I was able to provide some amusement for you as you slip beneath my notice.

peace out

 

[Esther12]

Actually - in addition I just want to appologise to the moderators who got drawn in to this (especially if Cort really do go through reading this thing before making a judgement). I probably could have done more to clam things down (I tried a couple of times) but I find it hard not to snap back if I thikn I'm eing unfairly criticised. Hopefully it didn't take up to much of your time.

 

[Angela Kennedy]

Look - the 'tired patients' comment by Esther was offensive to me. I called her/him on it because it IS a huge issue for the community. I've had to witness the trivialisation of my daughter's terrible illness to the word 'tired' and/or 'fatigued' for many years. I was right to raise the issue and I did it reasonably.

I've bowed out of the debate only because I could see how heated it has become. I see Esther12 has NOT been able to resist hammering home her/his assertion that I'm somehow unfairly criticising her or being unreasonable, or that the issue is irrelevant, when most people in this community would understand it is not.

The latest 'lazy' comments are also excrutiating. Esther - I don't care if you're sometimes lazy - most people are at some times- but it is NOT a feature of CFS patients to be lazier than the rest of the population. I think that needs clarifying - by you. I find the lazy word offensive when it's implied that CFS diagnosed people are somehow more so then the rest of the world. This is because of the abuse heaped on people like my daughter FOR YEARS by such beliefs- who is suffering from objectively detected severe cardiac, immunological, and neurological dysfunction.

Whether Esther needs to be allowed to say she/he' lazy or 'tired' is one thing - but he/she needs to be aware that their experience is NOT that of others, that there are political problems in the use of those terms and that bringing them up is not a crime or a hissy fit, and that her use of them may be offensive!

There, I've said it. I don't feel safe enough to carry on contributing in this forum. I note no-one has told Esther to wind down his/her rhetoric against me- and, as I feared, recent posts indicate he/she thinks she has somehow won the point because I've refrained from further engagement.

I will one more time express my opinion about this idea of inviting psychs - the problems exhibited in this thread will be magnified. People like me (or Gerwyn) who are not afraid of rigourously critiquing the psychiatric paradigm are likely to get misrepresented and constructed as aggressive meanies. Others will feel even more vulnerable engaging directly with such people, and with good reason. I unfortunately have been the recipient of unsolicited personal mail from certain proponents of psychiatric explanations for CFS in the past - it ain't pretty. This has the potential for damaging the fragile eco-system that it a discussion forum for ME/CFS sufferers. It will be like inviting a great white, with a machine gun, into the pool.

I'll wait to be misrepresented in due course.

 

[Gerwyn]

Look - the 'tired patients' comment by Esther was offensive to me. I called her/him on it because it IS a huge issue for the community. I've had to witness the trivialisation of my daughter's terrible illness to the word 'tired' and/or 'fatigued' for many years. I was right to raise the issue and I did it reasonably.

I've bowed out of the debate only because I could see how heated it has become. I see Esther12 has NOT been able to resist hammering home her/his assertion that I'm somehow unfairly criticising her or being unreasonable, or that the issue is irrelevant, when most people in this community would understand it is not.

The latest 'lazy' comments are also excrutiating. Esther - I don't care if you're sometimes lazy - most people are at some times- but it is NOT a feature of CFS patients to be lazier than the rest of the population. I think that needs clarifying - by you. I find the lazy word offensive when it's implied that CFS diagnosed people are somehow more so then the rest of the world. This is because of the abuse heaped on people like my daughter FOR YEARS by such beliefs- who is suffering from objectively detected severe cardiac, immunological, and neurological dysfunction.

Whether Esther needs to be allowed to say she/he' lazy or 'tired' is one thing - but he/she needs to be aware that their experience is NOT that of others, that there are political problems in the use of those terms and that bringing them up is not a crime or a hissy fit, and that her use of them may be offensive!

There, I've said it. I don't feel safe enough to carry on contributing in this forum. I note no-one has told Esther to wind down his/her rhetoric against me- and, as I feared, recent posts indicate he/she thinks she has somehow won the point because I've refrained from further engagement.

I will one more time express my opinion about this idea of inviting psychs - the problems exhibited in this thread will be magnified. People like me (or Gerwyn) who are not afraid of rigourously critiquing the psychiatric paradigm are likely to get misrepresented and constructed as aggressive meanies. Others will feel even more vulnerable engaging directly with such people, and with good reason. I unfortunately have been the recipient of unsolicited personal mail from certain proponents of psychiatric explanations for CFS in the past - it ain't pretty. This has the potential for damaging the fragile eco-system that it a discussion forum for ME/CFS sufferers. It will be like inviting a great white, with a machine gun, into the pool.

I'll wait to be misrepresented in due course.

Yes I too found esthers comments .wilfull use of rhetorical devices and portayal of people with ME offensive.I found the tone of her comments and choice of terminology provocative and condescending.I also object to be labelled as aggressive and bullying just because I am not willing to accept what I believe to be a quite deliberate attempt to denigrate sufferers of this illness.There are quite enough platforms available now for the psychiatrists of the Wesselly school to spew their bile without exposing this forum to such pollution.That of course is only my view but it is genuinely held and not a position adopted to play with anyones emotions.I will stand up for people with my illness for as long as i am able to.There were years when I could not have read a word on this forum and I will not stand by and see this desperately disabling illness trivulised however my actions and motives are portrayed.As the old saying goes if you cant stand the heat stay out of the Kitchen!

 

[Esther12]

Look - the 'tired patients' comment by Esther was offensive to me. I called her/him on it because it IS a huge issue for the community. I've had to witness the trivialisation of my daughter's terrible illness to the word 'tired' and/or 'fatigued' for many years. I was right to raise the issue and I did it reasonably.

I've bowed out of the debate only because I could see how heated it has become. I see Esther12 has NOT been able to resist hammering home her/his assertion that I'm somehow unfairly criticising her or being unreasonable, or that the issue is irrelevant, when most people in this community would understand it is not.

The latest 'lazy' comments are also excrutiating. Esther - I don't care if you're sometimes lazy - most people are at some times- but it is NOT a feature of CFS patients to be lazier than the rest of the population. I think that needs clarifying - by you. I find the lazy word offensive when it's implied that CFS diagnosed people are somehow more so then the rest of the world. This is because of the abuse heaped on people like my daughter FOR YEARS by such beliefs- who is suffering from objectively detected severe cardiac, immunological, and neurological dysfunction.

Whether Esther needs to be allowed to say she/he' lazy or 'tired' is one thing - but he/she needs to be aware that their experience is NOT that of others, that there are political problems in the use of those terms and that bringing them up is not a crime or a hissy fit, and that her use of them may be offensive!

There, I've said it. I don't feel safe enough to carry on contributing in this forum. I note no-one has told Esther to wind down his/her rhetoric against me- and, as I feared, recent posts indicate he/she thinks she has somehow won the point because I've refrained from further engagement.

I will one more time express my opinion about this idea of inviting psychs - the problems exhibited in this thread will be magnified. People like me (or Gerwyn) who are not afraid of rigourously critiquing the psychiatric paradigm are likely to get misrepresented and constructed as aggressive meanies. Others will feel even more vulnerable engaging directly with such people, and with good reason. I unfortunately have been the recipient of unsolicited personal mail from certain proponents of psychiatric explanations for CFS in the past - it ain't pretty. This has the potential for damaging the fragile eco-system that it a discussion forum for ME/CFS sufferers. It will be like inviting a great white, with a machine gun, into the pool.

I'll wait to be misrepresented in due course.

No Angela, it does not need to be clarified by me that CFS patients are no lazier that the rest of the population. I’ve said nothing to imply otherwise. That you still find my post offensive is not a crime, but it is a hissy fit.

It is not because you’ve stopped replying that I think I am right.

Here’s the post of mine Angela’s referring too, just so she can’t complain that I’ve misrepresented anything:

I understand this. I know that having CFS is difficult, especially when patients are so often poorly treated; but I don’t want to have my behaviour driven by the prejudices of others. I am tired. I’m far less lazy than when I was well, but sometimes I’m lazy, and I don’t want to feel unable to be honest about this just because I’m scared that it will play in to the prejudices of others. I understand if others don’t want to talk in this way, but I don’t think they have any credible reason for attacking me for doing so.

Yes I too found esthers comments .wilfull use of rhetorical devices and portayal of people with ME offensive.I found the tone of her comments and choice of terminology provocative and condescending.I also object to be labelled as aggressive and bullying just because I am not willing to accept what I believe to be a quite deliberate attempt to denigrate sufferers of this illness.There are quite enough platforms available now for the psychiatrists of the Wesselly school to spew their bile without exposing this forum to such pollution.That of course is only my view but it is genuinely held and not a position adopted to play with anyones emotions.I will stand up for people with my illness for as long as i am able to.There were years when I could not have read a word on this forum and I will not stand by and see this desperately disabling illness trivulised however my actions and motives are portrayed.As the old saying goes if you cant stand the heat stay out of the Kitchen!

Neither you nor Angela have replied the posts where I took the time to lay your quotes out for you, and show where you had become confused. I think doing so would be more likely to be productive than reverting to these vague pot-shots.

 

[Cort]

Thread Closed!

Now I am going to close this thread. At their best Forums are ways to sift the facts and achieve consensus but this thread has gotten too hot to do that. I see no consensus or hope of consensus emerging - I just see people digging in.

So before people starting reaching through their computers to strangle each other the invite the Psychologist to the party thread is closed! It will always be here in case anyone wants to revisit it...