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

Status
Not open for further replies.

Angela Kennedy

Senior Member
Messages
1,026
Likes
146
Location
Essex, UK
Woah, people, we are all wired right now, aren't we. Please remember that one of the biggest lessons in life is learning how to let go. Of your kids, your youth, and in the end, your life.

There are better things to be done with all the energy I see expended on this thread that spiking at each other. Haven't we got enough enemies already? Jesus taught us to love our enemies. Come on now, group hug, good things are happening. Let's focus on the positive, it's better for our health.
Hi Jace

I'm really not 'wired' - I don't think anyone else is either. I'm afraid I'm an atheist as well, and have serious concerns with the idea of being exhorted to 'focus on the positive' (I've just read Barbara Ehrenreich's Smile or Die, which may have something to do with that).

No offence intended- but I think sometimes problems arise and they have to be dealt with, in all areas of life. Sometimes that means making objections and taking part in arguments. We are talking about some very difficult issues here, some of which are fundamental to ME/CFS politics and how patients are being treated.
 

Adam

Senior Member
Messages
495
Likes
2
Location
Sheffield UK
I don't know if any UK members watch the TV programme Embarassing Bodies? C4's slightly embarassing 'health' show aimed supposedly at getting people with embarassing aliments/complaints etc. to come forward and discuss them/reveal their malfunctioning body parts on TV!

One episode centred around bowel problems/wind. Of course they made light of it by employing lots of fart gags, but of course, there was a serious side to it.

They featured this poor woman who had apparently been thoroughly investigated for bowel cancer/inflammatory bowel conditions had been given a diagnosis of IBS. She met the programmes Doctors ans was told all was not lost. You do not have to put up with this troublesome/painful EMBARASSING condition, oh no, help is at hand. We can treat this.

You guessed it, with...

PSYCHOBABBLE.

Or in this case hypnotherapy delivered by some NHS underling after a 10 week training course (probably), which included several sessions of Gut Therapy or Gut focussing, I think they called it.

I know, I know, you're thinking what I'm thinking aren't you?

Aren't you?

Anyway, when interviewed (a few weeks later) the poor sod said she had been practising the gut focus and that yes she did think she had seen an easing of the symptoms.

Hmmm.

Not very scientific. Then again, head therapy rarely is.

What really struck me about this ludicrous 'treatment' was the fact that the patient was being made to feel responsible for her gut symptoms.

For goodness sake woman, get a grip will you! It's your fault. Can't you just control you bowels for one second. No, you don't have anything physically wrong with you and we've already wasted precious resources doing tests and investigations when there's clearly nothing wrong with you.

Doctors - hang your heads in shame.
 

leaves

Senior Member
Messages
1,193
Likes
32
I am reading through this thread and I must say that I find the tone of the conversation very aggressive and intolerant. Is this really necessary? We are all patients here, living in a hostile world in dire need for a safe, tolerant and supportive haven where we are accepted as we are. Let's make sure this forum stays that place.
 
Messages
71
Likes
0
Tired?

So is it true that CFS patients are often tired or not? If so, then why is it such a problem for me to say so? Again, Id posted your full quotes here as well.
Tired? I would love to be "tired." The nature of the "tiredness" in ME/CFS is so far beyond that, it is almost useless to explain to someone who persists in using that word. This is beyond hitting-the-wall exhaustion. If I am lucky enough to sleep, even way back when I had hypersomnia with this disease, I still wake up feeling like I haven't slept, and I've gone a few rounds boxing and am quite clearly losing. I still feel like it's been 25 years since I slept- and every night in between I feel like I must have been up running all night but yet, somehow, I'm still right in my bed where I started out. No matter the amount of sleep- and admittedly, hypersomnia is two decades in my past now- my brain always feels like it used to be a sophisticated piece of electronic equipment that someone dumped in a full sink. In the mornings in particular, it is difficult to gather a coherent thought. My adrenal glands are constantly shooting me full of adrenalin which doesn't seem to affect any part of me but my heart rate, though it gives my brain that certain "panic attack" feeling while not a true panic attack. It never clarifies my thoughts or gives me the energy to do anything with it. I vaguely recall before this illness that "adrenalin rushes" could be fun things. Now the stuff just runs through my system, makes me shake and my already elevated heart rate shoot through the roof, yet there seems to be no benefit. They leave me further exhausted and yet, unable to sleep.

"Tired" just can't begin to describe this disease. Let alone, "often tired." Those who insist this is psychogenic do not seem to understand that. I cannot go back and read this entire thread, so I am asking here- do you have any experience at all with this disease? I know that no one who has experienced this for 6 months or more would consider how they feel "often tired." That experience is long in my past, and associated with doing things, perhaps even mental fatigue, that was relieved by rest or eating or "taking a day off."

I have no idea why you started this thread. Do not those with the psychogenic origin POV regarding this disease have more than enough forums in which to ram their opinions down the public's throat?
 
G

Gerwyn

Guest
I started the following on another thread.on reflection however I feel that it belongs here



Join Date
Jan 2010
Location
wales
Posts
862

Default WHAT PSYCHIATRISTS REALLY THINK ABOUT PATIENTS WITH ME cfs THE TRUTH

I will kick off with two quotes

Proffessor Anthony Davies Institute of psychiatry(wesselly school)

"A diagnosis of a depressive illness would be appropiate.Unfortunately this is not good enough for the patients"

(Post Viral fatigue syndrome and Psychiatry.British Medical bulletin.1991:47:4:966-988)

"Though disordered and persisting viral infection have recently attracted attention,it is important that immunologists do not deflect attention away from the wider(ie psychiatric) aspects of the chronic fatigue/post viral syndrome"

Myalgic encephalomyelitis or what? Anthony Davies,simon Wesselly,Anthony Pelosi.Lancet1988:July9,
100-101

Anyone fancy asking these along to the forum for a debate?
 

leaves

Senior Member
Messages
1,193
Likes
32
Hello Maarten,

Summarizing...In your email you state that you are who you say you are but some are not whom they say they are, what is more they are not patients, or at the very least patients with psychological issues.

I have no idea whom you suggest to be in this masquerade, and i am also not very sympathetic towards hidden accusations, but this is besides the point.

The point is that everyone on this forum deserves respectful treatment, EVEN those with psychological issues (for what its worth, I have yet to meet the first person that is without psychological issues) and EVEN those that have identity issues and enjoy spending their time and energy in a forum representing someone they are not (I predict few if any people are that way).

All opinions should be considered, also those of the brave that have opinions that differ from the majority. These people put themselves in a very vulnerable situation and often times help us to improve our assumptions and premises. We don't all have to agree. Homogeneity, be gone.
 

Esther12

Senior Member
Messages
13,774
Likes
28,359
Bit of a long one here. Sorry if there are typos or formatting problems.

Also - we could go on like this all day. Round and round in circles. It's possible this is Esther12's intent, and the misrepresentation of others views part of that.

Esther12 wants ILL (not 'tired') people to engage directly with psychs on this forum. People have explained why this is a TERRIBLE idea. Esther12's now taken on us a rather unpleasant detour (the exaggerating CFS- that's astounding, the misrepresentation of people as merely 'tired' NOT important enough to engage with by him/her? Wow. The choice of the word 'tired' instead of 'ill' big alarm bells). Then he/she blames others for objecting and basically accusing them of derailing the thread.

In the end it becomes impossible to have a rational debate with someone who keeps misrepresenting other people's points, which is what Eshter keeps doing. Now - taking Gerwyn's last comments, if people are having problems with Esther12's technique of debate, similar as it is to the way we've certain public figures operate - imagine having to have that with one of the proponents of the psychiatric paradigm of ME/CFS!

I've also noticed the pushing of certain buttons - certainly the fatigue/'tiredness' one is a major issue for people generally. I have no idea of Esther12's agenda here - it is possible he/she is truly an ingenue when it comes to the filthy politics of ME/CFS, actually naive but a little too arrogant to admit that. Maybe there is an ideological committment to a psychiatric paradigm of ME/CFS there. Who knows?

I do think it is significant that a major issue (around 'fatigue'/tiredness) has been trivialised by Esther12, including his/her last post. Of course, I brought it up for a good reason, not to be mean! That Esther12 tried to dismiss them as being of 'no relevance' is significant. Of course they are signficant points, not because my delicate ego wants them to be, but because many, many advocates over many years have objected to the over-focus and misrepresentation, of serious physiological impairment, to 'fatigue' or 'tiredness' and the dismissal of all the other devastating signs and symptoms suffered by those given a diagnosis of 'CFS' (and/or 'ME').

This thread was not a good one to start with. The idea TERRIBLE. It's impossible to have a rational debate with someone who uses various rhetorical techniques to prevent rational debate but win the point with the linguistic equivalent of saying 'you're a big poo-poo head' sticks their fingers in their ears singing 'la-la-la' then running off to an imaginary daddy.
Rather than these vague complaints of misrepresentation, can you go back, find the quotes, and point out exactly what you mean. I tried to do that recently, collecting all of the relevant posts together, quoting them in full, and going through them.

Your final paragraph seems to be a complaint that my replies are too mocking the way youve phrased this complaint rather undermines your ability to take the high-ground here. You seem to think that you should be able to take pot-shots at others, yet its terribly unfair or them to reply in kind.

You never replied to post 179 either.

Esther12;66291]I really thought that tracing the discussion back for you would have helped, but it doesnt seem to have.

You think that you are taking arguments to logical extremes but you are not. When you read my comment On-line forums seem to me to be the ideal place for tired patients to be able to engage in this sort of discussion and decided that I was misrepresenting Canadian defined ME/CFS, or could not possibly understand the levels of impairment faced by others, this was not a logical extension of what I said, just a misrepresentation of it.

I would not want you to refrain from commenting upon elements of my posts which you find objectionable, but please try to limit yourself to my posts. When you attempt to logically extend my comments you usually end up attacking a position I do not hold. I thought that my last post, going through the trail of our discussion, would have made that clear.

Re I misrepresenting you: I do not see where I have done so. You gave two examples:

1) You being set off is my own characterisation of your response, I think it is a fair one, but even if it were not, it came immediately beneath a post where I had posted your response in full for all to see. I think I show be allowed my own commentary on it, even if you disagree with it.
2) You being angry/not angry about me talking of tired patients. So is it true that CFS patients are often tired or not? If so, then why is it such a problem for me to say so? Again, Id posted your full quotes here as well.

I may not have acknowledged your points about Wessely, tiredness and fatigue. As you present them again here, they are of no relevance to anything Ive said, but Im happy to acknowledge them for you. Its not a significant problem for me.

Considering the tone of your own posts, I do not think you can complain if Im occasionally less the courteous in reply.

Re exaggerating CFS: The whole discussion, from me being picked up for saying its possible to exaggerate how bad CFS is, was ludicrous and pointless.


Part 1


No, me trying to improve you rather confused analogy was a trivial point.




no that is not what you said


Okay. Lets go back through this again.

Youd written: A compelling argument made by a proponents of the view that ME is a psychological disorder would be about as likely as creationists aknowledging the primacy of evolution.

The only assumption Id made was that you were using a definition of creationist which included a rejection of the primacy of naturalistic evolution in the emergence of life. You may been referring to those creationists who claim a Creator was involved at some earlier point, and then left the universe unguided but this would have made even less sense.


If a creationist is someone who does not acknowledge the primacy of evolution, then it is impossible to have a creationist who does so. It would be like 1=/=1.

No you replied to what you what you thought i said changed my words gave them a different meaning and gave a reply which siuited your argument.Nice technique but disengenious..the content of what you said is tribute to your imagination but nothing to do with what I said.Sheer folly by way of repitition does not cease to be sheer folly

I;ll now go back to my earlier explanation, which I think did a fair job:

self praise is no recommendation

>You were saying: It would be as likely to get a convincing argument that CFS is a primarily psychological illness as a creationist not being a creationist (ie impossible).

Now that is what I said what follows is your speculative assumptions originating within your own mind.in short you were putting words into my mouth.A trick used by many poiticians when the facts dont suit their arguments

>The fact that the impossible thing you are mentioning happens to involve a creationist has nothing to do with the point you are trying to make, but because you are making a point about poor arguments which are unsupported by the evidence, the mention of a creationist is a distraction. I thought that maybe you mentioned creationism because you wanted to draw a parallel between creationism and the psychologisers, so re-phrased your analogy in a way which would do this. Just lending a hand.

Some of this post of yours seems a bit garbled eg: g: It would be as l? Letters seem to be missing or in the wrong order.

I never said i was a good typist.I think you will find that the post was corrected.A bit garbled of course once again a meaning o ra label which you have chosen because you find it convienient

These are simple points, and Ive not over analysed them. Ive just taken the time to explain them.
no what you have done is changed their meaning to suit your argument.A well known debating trick but not an explanation.Referring to post numbers and not citing your words is another one

Part 2. You seem to have missed out your reply to the first half of this part.

you seem to have missed out replies on everything that was said but repied only on what you "thought" was said



As I tried to make clear, Im not sure about this. But I think that if someone was to gather a crowd of people together and say This is a fact: and then spend a few minutes shifting money about, a lot of the crowd would think he was nuts. If someone then said Hes moving money around, that would be a fact.

again that is not what you originally said.you do seem to have difficulty with clarity and fact

Regardless, the point I was trying to make is that there is nothing wrong with being convinced about something just because of words words are very useful way of communicating information and facts, indeed, I think that facts might require some such form of communication in order to be considered facts.



That of course was not the point you actually tried to make

I was talking about something different. I dont think that facts and evidence are synonyms, although I think that facts can be used as evidence. This is all getting a bit linguistic and off topic though.

your posts are entirely linguistic. I note your use of the I was talking about something completely different gambit again

Part3


In my original post Id said free speech and debate in your reply youd phrased it as free debate and discussion, but gave no indication of a change in meaning. Even if we accept your change of terminology, youre still wrong.

I said free debate and discussion at no time did I mention free speech You did whatever your interpretation to the contrary.You once again ascribed a meaning contrary to my original statement.You are wellcome to check the accuracy of my statement.Unless you call wrong any fact which is contrary to your entirely subjective viewpoints

I dont think you can be said to have free debate if it is known in advance that anyone who opposes the ideas of the government will be punished for doing so. If thats free debate, whats restricted debate? When people have their mouths sown shut at birth? I think it is you who have a warped understanding as to what free debate would entail.

it was not known in advance(checking your facts would be helpful).you are once again confusing your subjectivity with fact.



I was playfully highlighting your slightly garbled use of language: The problem is that you dont speak for the facts is not a terribly clear way of communicating anything.


i dont think that you are in any position to comment on the percieved garbled use of language by another judging by the rambling nature of your own posts(as i percieve things of course)

Of course I dont speak for the facts. No-one does!

perhaps you could clarify and define your terms here

If you look at point number three of post #166 you can see youre complaint that I misquoted you: I actually said that you dont use any facts. If you can misinterpret that you would have little chance in a debate against someone who deliberately used words with a specifc definition hidden as plain english. You can see that I quoted you correctly with The problem is that you dont speak for the facts if you go to post #155.

The whole thing makes you look a little silly Im afraid.


you were answering the post when i said you dont use any facts .You chose not to reply to that I dont think you were being silly merely disingenuous.perhaps if you used words and not post numbers you would not be quite so confused in these matters

Part 4:


The post I was replying to began with I did not say any such thing. I then posted the quote in support of my claim, introducing it as such a thing.

no what you did once again was change my words to suit yourself and posted support for your misrepresentation of what i said. Again If you referred to your words rather than post numbers that would probably be clearer to you




Its possible for people to be convinced of stupid things, but I think that it is patronising to assume that they will be (I suppose some people deserve to be patronised), or to use that as a reason to limit the available discussions on a forum like this.

yes it is possible to be convinced by any plausible factually incorrect argument.That is actually what I said .Stupid things and patronising are your words not mine.Yes some people deserve to be patronised.I am thinking about people who doubt the biomedical causation of this illness

I think that your position assumes rather less of people than mine.

I think that your position is entirely based on erroneous assumptions

You also seem to have missd out some replies to part 4.

No I decided it wasn,t worth my time arguing with someone with a totally closed mind who would not reply to any statements I made. It was rather like arguing with a politician who takes a persons words changes their meaning and the bases a reply based on that deliberately changed meaning.in my view people who continually do that(Wesselly is a good example )are not worth arguing with and best ignored

I dont normally like to pick up others spelling/grammar/language use in a discussion like this, not least because mine can be so weak too but I really think its a bit of a problem with your posts, especially as you seem keen to engage in a debate over rather minor linguistic technicalities and think that Im disingenuously misinterpreting you. A few times now Ive spent some time typing an explanation as to why Ive interpreted your posts in a certain way, only to have you say no, but not explain your own alternative interpretation.

I also think wed be able to progress much more quickly if you were to use more direct quotations of the text youre discussing. Youve complained about me not doing this enough, and using post numbers instead, but you seem to not be doing either.

no that is not what you said
Yes it is check post 166: This is a trivial point I understood what you were trying to say but thought its expression was slightly confused. If you still disagree , can you post the quotes and post numbers with an explanation as to why.

words gave them a different meaning and gave a reply which siuited your argument.Nice technique but disengenious..the content of what you said is tribute to your imagination but nothing to do with what I said.Sheer folly by way of repitition does not cease to be sheer folly
[/COLOR]
I can barely understand this. Normally I would struggle by, but it would be greatly appreciated if you could try to write a bit more clearly. Could you also try to reply with a more precise explanation as to where my interpretation went wrong? Theres nothing in your reply that would give me any clue as to where we disagree.

Now that is what I said what follows is your speculative assumptions originating within your own mind.in short you were putting words into my mouth.A trick used by many poiticians when the facts dont suit their arguments
Where do these speculations part from your intended meaning? I do not see how they could do so. They are not speculations about what you meant, they are explanations as to what you said, and why it was rather clumsily expressed.

I never said i was a good typist.I think you will find that the post was corrected.A bit garbled of course once again a meaning o ra label which you have chosen because you find it convienient
Would you be able to read your posts through and see if you can spot any of the mistakes? Is English your first language? You sometimes use it in a rather unusual manner. Im dyslexic, so know that it can be a pain to communicate with the written word, but it would be great if you could iron out some of the worst mistakes in your posts.

you seem to have missed out replies on everything that was said but repied only on what you "thought" was said
Would you be able to provide the quotes of what you said and my interpretation, and then explain where I went wrong? This comment is a bit vague, and doesnt really allow me to identify where we disagree.

again that is not what you originally said.you do seem to have difficulty with clarity and fact
Lets trace this back.

I originally said (rather casually, as an aside ,and not realising it would lead to this prolonged debate.

Esther12 said:
I'm not sure about this, but I think that for something to be a fact, it would need to be symbolically expressed. You cannot point at a person and say "That is a fact."
You then replied
Gerwyn said:
What do mean by symbolically expressed could you define that term. The earth orbits the sun that is a fact .Why can I not point to a person and say that. on reflection however it seems to me that you are genuinely that uncertain about how to distinguish fact from fiction and believe that a factual statement has to be accompanied by a metaphor of some kind.I fear that your chances of succeding in a debate against a doctor would be minimal.

I replied:

Esther12 said:
Right: The Earth orbits the Sun is a fact. But if you just pointed at the sun, this would not be a fact. 1 + 1 = 2 is a fact, but if you just moved money around in front of someone to illustrate this, I dont think that could be described as a fact.

Ive not really thought much about this, but I think the term fact only applies to claims about reality, rather than simple presentations of reality. You seemed rather dismissive of people using words rather than facts but I think words are often used to express facts, and that the word fact may actually only apply to expressed claims rather than just evidence.
You replied:

Gerwyn said:
you mean that moving money around cant be described as a fact

[And]

you do seem to have trouble understanding the word fact dont you.words may or not be used to express facts. Facts and claims are different entities.are facts not evidence in your lexigon?
I replied:

Esther12 said:
As I tried to make clear, Im not sure about this. But I think that if someone was to gather a crowd of people together and say This is a fact: and then spend a few minutes shifting money about, a lot of the crowd would think he was nuts. If someone then said Hes moving money around, that would be a fact.

Regardless, the point I was trying to make is that there is nothing wrong with being convinced about something just because of words words are very useful way of communicating information and facts, indeed, I think that facts might require some such form of communication in order to be considered facts.

[And]

I was talking about something different. I dont think that facts and evidence are synonyms, although I think that facts can be used as evidence. This is all getting a bit linguistic and off topic though.
Were now up to you current post:

again that is not what you originally said.you do seem to have difficulty with clarity and fact
As you can now see, Ive been consistent through out this discussion. Id be interested to see exactly where you misunderstood me.


dont think that you are in any position to comment on the percieved garbled use of language by another judging by the rambling nature of your own posts(as i percieve things of course)
I have no choice: if youre going to complain about me twisting your words Ive got to be able to point out that your words were twisted long before I got to them.

perhaps you could clarify and define your terms here
This discussion began with post 151, where you wrote: The problem is that you dont speak for the facts

Its a complaint that doesnt really make sense, but I didnt want to quibble over your use of language, so originally just tried to muddle through, presuming you thought that there was some conflict between my post and the facts and asking which facts I had contradicted. That led no-where. Ive since been trying to explain why my not speaking for the facts is not a problem, as no-one does. We can make claims about and of facts, providing supporting evidence or criticising the evidence of others, but we cannot speak for the facts. If you do not mean that my claims are contradicted by the evidence, I do not know what your original complaint is of: You think Im wrong but do not want to bother identifying precisely where? You want me to present some evidence in support of my claims? If so, youve never pointed out which ones need further support.


you were answering the post when i said you dont use any facts .You chose not to reply to that I dont think you were being silly merely disingenuous.perhaps if you used words and not post numbers you would not be quite so confused in these matters
In post 162, I did reply to your comment about no facts. (You'd said 'The problem is that you dont speak for the facts' - I assumed this meant you thought I'd made some factual error. You actually meant that I am not acting as spokesperson for some entity known as 'the facts'?) Of course, I did not then proceed to provide a list of copy and pasted facts, because you gave no indication as to what claims you wanted supporting evidence for, or thought were inaccurate. If you want a more specific reply, you should ask a specific question. Just baldly asserting that my posts contain no facts is a rather empty gesture.

Lets trace this one back again:

It started with my reply to someone else:

Esther12 said:
3 I do speak for myself, and will continue to do so, even if it doesn't fit in with what others would like to hear.
You then presented the now infamous phrase:

Gerwyn said:
The problem is that you dont speak for the facts
I assumed this meant that you thought you had found some contradiction between the known facts and my posts what could it be maybe I had made some mistake and was about to learn something new and interesting?

Esther12 said:
3) What facts have I contradicted?
Sadly, a disappointing answer that would not lead to any further useful discussion:

Gerwyn said:
you have not contradicted any facts because you have not used any
Given the tone of your own responses I decided to have some fun, taking your initial comment literally, and asking what it could mean:

Esther12 said:
3) You'd said 'The problem is that you dont speak for the facts' - I assumed this meant you thought I'd made some factual error. You actually meant that I am not acting as spokesperson for some entity known as 'the facts'?
This post seems slightly confused to me:

Gerwyn said:
I,m sorry that you view facts as a kind of entity.peoples who's arguments are based soley on the misuse of words do find facts to be a spectre or their nemesis. I actually said that you dont use any facts.If you can misinterpret that you would have little chance in a debate against someone who deliberately used words with a specifc definition hidden as plain english.perhaps you dont actually believe that there are such things as facts.I think that this might be the case as you tend to assume your interpretations are evidence enough. It seems to me therefore that you would not have any basis for deciding on whether an argument was a ggo one or not.

I thought your complaint that I actually said that you dont use any facts referred to me having quoted you as saying The problem is that you dont speak for the facts if this is not the case, can you please point out what it did refer to? This seems to be the crux of the current dispute.

Esther12 said:
Youre complaining about the fact I claimed you said The problem is that you dont speak for the facts. Maybe you should have checked on this before writing a post attacking me for so stupidly misunderstanding you. (check post 151).
Here you seem to think I said that I had stupidly misrepresented your post. I have not found what would make you think that, and would appreciate it if you could provide the quote which did so.

The post you quoted was clearly a question about what it was you thought your sentence was saying one to which youve still not replied.

Gerwyn said:
No this your comment that I am referring to:


You'd said 'The problem is that you dont speak for the facts' - I assumed this meant you thought I'd made some factual error. You actually meant that I am not acting as spokesperson for some entity known as 'the facts'?

you mentioned that you had stupidly misrepresented my post not me.
Here I point out where your false accusation of misquoting occurred:

Esther12 said:
If you look at point number three of post #166 you can see youre complaint that I misquoted you: I actually said that you dont use any facts. If you can misinterpret that you would have little chance in a debate against someone who deliberately used words with a specifc definition hidden as plain english. You can see that I quoted you correctly with The problem is that you dont speak for the facts if you go to post #155.

The whole thing makes you look a little silly Im afraid.
And now were back to the present.


That of course was not the point you actually tried to make
Would you be able to provide the quote which has led you to believe I was trying to make another?

no what you did once again was change my words to suit yourself and posted support for your misrepresentation of what i said. Again If you referred to your words rather than post numbers that would probably be clearer to you
Check the post its got a direct quotation from you right after my introduction. I did not edit it.

cont...
 

Esther12

Senior Member
Messages
13,774
Likes
28,359
I said free debate and discussion at no time did I mention free speech You did whatever your interpretation to the contrary.You once again ascribed a meaning contrary to my original statement.You are wellcome to check the accuracy of my statement.Unless you call wrong any fact which is contrary to your entirely subjective viewpoints[/COLOR]
Lets trace this back again. I began the discussion of the benefits of free speech, debate and discussion as an antidote to propaganda in post 162 (note that I mention all three):

Esther12 said:
Sometimes words will be used dishonestly or stupidly, as was the case with Stalin and Goebbals, but it seems neither of us find them terribly convincing, so I do not think that we need to worry about that. Personally, I think that had either of them engaged in the sort of open ended discussions that can take place here, this would have served to undermine their totalitarian regimes, that depended upon a restriction of free speech and debate. Too much free discussion and debate was not a problem in either case.
You only mention free debate and discussion, not free speech, but you do not admit that the totalitarian regimes you had cited did use a restriction of free speech which, unless Cort goes barmy, is unlikely to be reflected upon these forums. You do seem to think that the Nazi and Communist states encouraged free debate and discussion, which strikes me as slightly peculiar.

Free debate and discussion was not a problem for the authorites.it was actively encouraged. it had no effect whatsoever apart from enabling the regime in question to target dissenters and eliminate them.It was certainly a problem fot those who took the opposing position in said debates. it is easy to dismantle an argument with the knowledge of hindsight and be able to see such an argument as propaganda. milions of people could not do so at the time howevervand totally believed the clever deceptions that they were repeatly fed. Every thing seemed plausable to them and they thought their authorities were telling the truth when they were not.highly skilled salesmen can create totally convincing arguments.It seems to me however that only a fool would believe them or someone who thogut they were telling the truth.It seems to me that there is not any practical difference.
I then replied, continuing our conversation, and reverting to my preferred terminology, which includes references to free speech.

Esther12 said:
You seem to have a strange idea as to what free speech and debate requires. Openly challenging the ideas of these totalitarian regimes certainly was a problem for those who did so - the brutal punishments they faced would, to me, rather indicate a lack of freedom of speech and debate.
You then seemed irritated that I had not adopted your terminology:

what I said was that that free DEBATE(not speech) and discussion had no EFFECT and was actively encouraged.you appear to have a very strange idea of the meaning of this statement!
I pointed out that I started the discussion, and that my original post on the topic included a reference to free speech, so it is hardly unfair of me to continue referring to it.

Esther12 said:
In my original post I’d said “free speech and debate” – in your reply you’d phrased it as “free debate and discussion”, but gave no indication of a change in meaning. Even if we accept your change of terminology, you’re still wrong.
You now think I’ve ‘ascribed meaning contrary to your original statement’ when really I’ve just been trying to maintain my original point.

I said free debate and discussion at no time did I mention free speech You did whatever your interpretation to the contrary.You once again ascribed a meaning contrary to my original statement.You are wellcome to check the accuracy of my statement.Unless you call wrong any fact which is contrary to your entirely subjective viewpoints[/COLOR]
Really, this whole discussion seems slightly surreal. You seem to think that debate and discussion was encouraged, because it would allow the authorities to identifying and punish those promoting ideas they were opposed to. To me, this would not be a system which could be classed as encouraging free debate and discussion – the punishments rather taking away from the important ‘free’ element.

I think that your position is entirely based on erroneous assumptions[/COLOR]
It would be rather more helpful if you pointed out precisely what they were. This vague references are rather difficult to provide any sort of meaningful answer to.

yes it is possible to be convinced by any plausible factually incorrect argument.That is actually what I said .Stupid things and patronising are your words not mine.Yes some people deserve to be patronised.I am thinking about people who doubt the biomedical causation of this illness
Here we can present whatever facts we choose though (I’m still waiting for the medical paper you promised) – so a plausible but factually incorrect argument can be rebutted.



Thank you for the comments and kind words from others. I’m afraid this post was a bit mammoth, so will not be able to reply to you all now. Thanks.
 

Esther12

Senior Member
Messages
13,774
Likes
28,359
Actually - I've got to reply to this:

Tired? I would love to be "tired." The nature of the "tiredness" in ME/CFS is so far beyond that, it is almost useless to explain to someone who persists in using that word. This is beyond hitting-the-wall exhaustion. If I am lucky enough to sleep, even way back when I had hypersomnia with this disease, I still wake up feeling like I haven't slept, and I've gone a few rounds boxing and am quite clearly losing. I still feel like it's been 25 years since I slept- and every night in between I feel like I must have been up running all night but yet, somehow, I'm still right in my bed where I started out. No matter the amount of sleep- and admittedly, hypersomnia is two decades in my past now- my brain always feels like it used to be a sophisticated piece of electronic equipment that someone dumped in a full sink. In the mornings in particular, it is difficult to gather a coherent thought. My adrenal glands are constantly shooting me full of adrenalin which doesn't seem to affect any part of me but my heart rate, though it gives my brain that certain "panic attack" feeling while not a true panic attack. It never clarifies my thoughts or gives me the energy to do anything with it. I vaguely recall before this illness that "adrenalin rushes" could be fun things. Now the stuff just runs through my system, makes me shake and my already elevated heart rate shoot through the roof, yet there seems to be no benefit. They leave me further exhausted and yet, unable to sleep.

"Tired" just can't begin to describe this disease. Let alone, "often tired." Those who insist this is psychogenic do not seem to understand that. I cannot go back and read this entire thread, so I am asking here- do you have any experience at all with this disease? I know that no one who has experienced this for 6 months or more would consider how they feel "often tired." That experience is long in my past, and associated with doing things, perhaps even mental fatigue, that was relieved by rest or eating or "taking a day off."

I have no idea why you started this thread. Do not those with the psychogenic origin POV regarding this disease have more than enough forums in which to ram their opinions down the public's throat?
Do you think I said The only problem CFS patients have is that they sometimes feel a bit tired? I did not, but youre almost acting as if I did.

If you were to say that cancer patients often get tired, that would not mean that you were saying the only thing wrong with cancer patients is that they sometimes get tired it wouldnt be a denial of their tumours!

I and my partner have both been seriously ill for about eight years. We are often tired. Far too tired to be able to work, and often too tired to leave the house. We do not love being tired its pretty rubbish. For you to claim that you would love to be tired seems far more insulting than anything I have said.
 
G

Gerwyn

Guest
more from our open minded psychiatrists

Psychiatric management of PVFS. M Sharpe. British Medical Bulletin 1991:47:4:989-1005

“Psychiatric assessment distinguished factors that perpetuate the condition from those that may have precipitated it. Treatments are targeted at perpetuating factors."

“To exclude (patients with a psychiatric diagnosis) is practically restrictive"

“Psychiatric management may be defined as the assessment and treatment of the mentally ill"

More from Dr Sharpe

Multiple perpetuating factors may operate (and) the following have been suggested in CFS:

“Infection: viral infection is of theoretical interest but of minor importance in managing established cases"

“Immune dysfunction: the possibility that immune function is impaired by psychosocial factors and may be improved by psychiatric treatment is a tantalising possibility"

“Other physiological factors: Several physiological factors may perpetuate symptoms. These include the consequences of inactivity and hyperventilation. "

“Psychiatric disorder: Syndromes conventionally termed “psychiatric” have been shown to occur in the majority of patients with CFS. Extensive physical investigation is unlikely to be fruitful and should be limited"

“Other psychological factors: Personality factors (attitudes, beliefs and thoughts) and behaviour have been shown to perpetuate disability. These unhelpful or “dysfunctional” cognitions include the beliefs that recovery from the illness is not under personal control or that the illness is poorly understood. It has been suggested that dysfunctional cognitions and maladaptive behaviour interact with the physiological factors and psychiatric illness to perpetuate the disability that comprises CFS. Increasing physical deconditioning…may lead to helplessness"

anyone feel its worth debating with this man?
 

Adam

Senior Member
Messages
495
Likes
2
Location
Sheffield UK
She said - he said

I said. He said. We said, no they said - did they say that...no, I said it, but all the same he said that I said that somebody else said...what was they said?...oh I know...it was...it was that I didn't say what you said I said...anyway, I think that's what it was...hmm, or was it? no.

Quote
Unquote
Quote
Unquote
Quote
Unquote

I did not say...wait

He said what I said was that what he said was well...what everyone was saying...he said that.

However... I know for sure I did not say that.

I was being misquoted.

And I can prove it because he said

blah blah blah

and I did not say

blah blah blah I actually said...

and here's the quote


:Retro tongue::Retro tongue::Retro tongue::Retro tongue::Retro tongue::Retro tongue::Retro tongue:
 

Lily

*Believe*
Messages
677
Likes
5
Instead of spending time daily on my usual brain game sites, I just come to this thread for a bit and try to follow a page or two. Great exercise, but in general it really is too advanced for my abilities. I must adhere to strict timelines otherwise it induces nausea.:worried:Seriously:(
 
Messages
1,387
Likes
1,833
Location
UK
I said. He said. We said, no they said - did they say that...no, I said it, but all the same he said that I said that somebody else said...what was they said?...oh I know...it was...it was that I didn't say what you said I said...anyway, I think that's what it was...hmm, or was it? no.

Quote
Unquote
Quote
Unquote
Quote
Unquote

I did not say...wait

He said what I said was that what he said was well...what everyone was saying...he said that.

However... I know for sure I did not say that.

I was being misquoted.

And I can prove it because he said

blah blah blah

and I did not say

blah blah blah I actually said...

and here's the quote


:Retro tongue::Retro tongue::Retro tongue::Retro tongue::Retro tongue::Retro tongue::Retro tongue:
ah thanks ,now I understand it, I thought it was just one person (would love to know who she really is) deliberately winding sick people up in order to attention seek
 
Messages
71
Likes
0
Okay, but I think I was pretty clear in making the distinction

Actually - I've got to reply to this:



Do you think I said The only problem CFS patients have is that they sometimes feel a bit tired? I did not, but youre almost acting as if I did.

If you were to say that cancer patients often get tired, that would not mean that you were saying the only thing wrong with cancer patients is that they sometimes get tired it wouldnt be a denial of their tumours!

I and my partner have both been seriously ill for about eight years. We are often tired. Far too tired to be able to work, and often too tired to leave the house. We do not love being tired its pretty rubbish. For you to claim that you would love to be tired seems far more insulting than anything I have said.
I think I plainly pointed out that "tired" is a very inaccurate way to describe the level of exhaustion most ME/CFS patients experience. 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. 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.

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

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. 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).

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

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

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.
 
Status
Not open for further replies.