CFS/ME-Brendan Clarke UCL lecture in Philosophy of Medicine course

[trishrhymes]

I hope Brendan Clarke reads all this before deciding whether to accept the kind invitation for him to join this forum and be lectured as to just how wrong he is.

I wonder if the invitation gave an indication of for how long he would be expected to sit on the metaphorical naughty step, and whether remission for good conduct was a possibility.

I would recommend that he makes contact with Jonathan, if members, of whom I would not have expected it, prefer and "like" abuse.

I don't understand why you consider polite disagreement to be unreasonable. I don't know whether these remarks were addressed to me or not. I hope I have directed no personal attack at Brendon Clark, or put him on the naughty step and wanting to 'lecture at' him.

I think his intention was good, but am concerned that he has apparently only seen the situation from the Wessely perspective. I tweeted him to suggest he might like to learn more of the other perspective by watching the OMF conference today, reading the JHP special issue on PACE and reading this thread.

I did this on the assumption that he was not a bad person, simply misinformed. I hope he is open minded and takes up my suggestions.

None of this could in any way be classed a unreasonable, I don't think.

Sadly, your comment reminds me of the Wessely school's characterisation of genuine critique of their work as harassment. Surely you want Brendan Clarke to be alerted to the fact that he has been given a partial and distorted picture by Wessely.

 

[Valentijn]

I would recommend that he makes contact with Jonathan, if members, of whom I would not have expected it, prefer and "like" abuse.

Calling someone out when they espouse bullshit is not "abuse", even if naughty words like "bullshit" are used in the process.

 

[Jonathan Edwards]

I hope Brendan Clarke reads all this before deciding whether to accept the kind invitation for him to join this forum and be lectured as to just how wrong he is.

I wonder if the invitation gave an indication of for how long he would be expected to sit on the metaphorical naughty step, and whether remission for good conduct was a possibility.

I would recommend that he makes contact with Jonathan, if members, of whom I would not have expected it, prefer and "like" abuse.

Come off it Chrisb. I joined this forum about four years ago.I have been on the naughty step in no uncertain terms on many an occasion - sometimes for months on end. You should look at some of the posts on the not so nice forums about me - and emojis you never knew existed. And I have loved every minute of it because I want to find out. If Dr Clarke does not want to find out he is in the wrong job.

To be fair he has a bigger problem - the problem Keith had. You get your contract reviewed after a little phone call. Some people thrive on that, others don't. But I always worked on the basis that if you want to find out you have to take risks.

 

[alex3619]

I have a limited background in philosophy. Philosophy is deeply involved in debate. Its never inappropriate to engage in sound debate with philosophy. Its only inappropriate to make personal attacks or other fallacious arguments.

Most philosophers should welcome sound debate and discussion.

 

[trishrhymes]

I have just got around to watching the lecture (I had only read the notes when I commented earlier).

Brendan argues that the Royal Free outbreak in 1955 provides an illustration of the dichotomy between ME, a biological illness, and CFS, a psychological condition supported by the mass hysteria hypothesis. He gives as an argument in support of this the lack of biological evidence and the 'fact' that only medical staff were affected.

I have just re-read the relevant sections of Melvin Ramsay's book (available from the ME association - you really should read it, Brendan). He was the infectious diseases specialist at the hospital at the time.

He spells out the detailed biomedical evidence, also the fact that actually 12 patients were affected, and that the disease had been endemic in the area for some time before it reached the Royal Free staff, and there were other outbreaks in other parts of the country. This demolishes the mass hysteria argument.

Add this to the evidence we now have from the reanalysis of PACE that GET and CBT don't work, and the whole case for the psychological basis of CFS falls down completely. There is NO valid scientific evidence to support the psychological theory.

There is huge and mounting evidence that it is a physical illness - and has been since the 1955 outbreak, if only Simon Wessely had been prepared to look for it.
...................

Another point from the lecture. Brendan persistently uses the word 'tiredness' as an apparently preferred alternative to 'fatigue'.

For me this is hugely problematic, and there have been discussions of the terms on these forums.

One of my main symptoms right from the start of my ME was muscle pain and fatiguability. The fatigue I experience is a bone deep weakness and pain in every muscle that gets worse in any muscle that is exercised, so that it becomes harder for that muscle to function.

At the start of my illness, even though I was physically fit and not tired, I still felt as if my legs were going to collapse from fatigue after a short walk, and had to sit down abruptly. I wasn't tired, but my legs didn't want to work. This is still the case now, but, being more severely effected, the distance I can walk is much reduced.

Tiredness, to me, is a result of lack of sleep, feeling sleepy and and in need of sleep. This is also a factor in ME, because we sufferer from sleep dysfunction, but I can be wide awake, not tired at all and still suffer severe physical fatigue.

Tiredness and ME fatigue are two completely different things.

 

[Chrisb]

Calling someone out when they espouse bullshit is not "abuse", even if naughty words like "bullshit" are used in the process.

Hi Val I wonder whether you could just clarify that. Yesterday I was surprised by this comment, as I took it to mean that you sided with those other two in their personal attack on me. That was the "abuse" to which I referred, though that may not have been obvious.

A new day suggests that this was not your intent and that you were merely saying that it is fair to comment on the work under discussion, a view with which I have no problem.

I would wish to confine the damage, if possible.

 

[trishrhymes]

Hi Val I wonder whether you could just clarify that. Yesterday I was surprised by this comment, as I took it to mean that you sided with those other two in their personal attack on me. That was the "abuse" to which I referred, though that may not have been obvious.

A new day suggests that this was not your intent and that you were merely saying that it is fair to comment on the work under discussion, a view with which I have no problem.

I would wish to confine the damage, if possible.

@Chrisb I think I misunderstood your earlier post. I thought you were suggesting we were directing abuse at Brendan Clarke.

Now it seems you meant we were directing abuse at you. I have just re-read the whole thread, and am bemused. I don't see anyone abusing you, just offering polite, if at times robust, disagreement. Saying someone has got something wrong and questioning whether they have understood the issues is not abuse. Though of course it can be uncomfortable to be on the receiving end of disagreement with, or criticism of, our comments.

I am sorry if you have felt abused, and if you feel I had any part in it. You have just as much right to express your opinion as the rest of us and I hope will continue to do so on any issue on PR. However, in doing so we must all accept that sometimes others will disagree, sometimes quite forcefully.

 

[Valentijn]

Yesterday I was surprised by this comment, as I took it to mean that you sided with those other two in their personal attack on me. That was the "abuse" to which I referred, though that may not have been obvious.

If there's been abuse, I haven't seen it. And if you feel someone has said something abusive, report it to the moderators and they'll deal with it.

What I have seen a lot of lately on social media is an attempt by the self-appointed Tone Police to shut down criticisms by claiming that criticisms are pretty much automatically abusive. This seems to be a last ditch effort to avoid the open scrutiny of science and data, now that there's a fairly widespread consensus that science should indeed be open to everyone.

 

[Chrisb]

I would draw your attention to post #18

 

[trishrhymes]

I would draw your attention to post #18

Forceful, yes, uncomfortable for you to read, yes. I don't see it as abusive, but if you do, please do report it to the moderators.

 

[Skycloud]

For anyone interested:
further brief comment with regard to CFS/ME, in Clarke's conclusion, Lecture 6 at 18.26 minutes. re: idiopathy and causation

 

[Valentijn]

I would draw your attention to post #18

Could you indicate which part you feel is abusive? I see some anger and some pointed questions which you have not answered, but nothing I would feel abused by if addressed to me.

 

[Chrisb]

Forceful, yes, uncomfortable for you to read, yes. I don't see it as abusive, but if you do, please do report it to the moderators.

So you choose not to resile from your approval of the statement that I mock the suffering of people with ME and the suggestion that I may be unaware of the damage caused by Wessely and crew. Even though I have had this illness for 37 years, still remember being appalled by the first reports of the efforts of Wessely and Chalder, and hold them partly responsible for the circumstances which led to the withdrawal of any appropriate medical access.

Who needs enemies?

Yesterday I hoped that the adverse comments would die down and that this might appear to be a forum which a reasonable person might wish to join.

 

[Valentijn]

Yesterday I hoped that the adverse comments would die down and that this might appear to be a forum which a reasonable person might wish to join.

"Adverse" is not the same as abusive.

 

[Chrisb]

"Adverse" is not the same as abusive.

I see no reason for thinking it is. I am sure you were a good enough lawyer to understand that.

 

[trishrhymes]

Who needs enemies?

I am really sorry you feel so hurt by the post you refer to. I understand it does seem unfair for such a forceful comment to be directed at you as a fellow sufferer. To be honest I saw the criticisms as directed more at the lecturer than at you, which is why I 'liked' it. I will removed my 'like' from the post.

However, I did agree that an apparently uncritical description of the video as benign seemed to miss the point that such espousing of the Wessely narrative in a supposedly well researched academic lecture is harmful to ME sufferers, yourself included.

Please, try not to take people's anger at the way the Wessely narrative is damaging us all as a personal attack on you. I repeat, if you feel @Snowdrop was wrong and went too far, do report the post to the moderators.

 

[Chrisb]

Thank you for that Trish. I think our differences are resolved. It is always best to sort out matters directly without the necessity of outside intervention. One might hope that differences with the remaining parties might be similarly settled.

I understand that my failure to address the point about the Wessely narrative may have caused annoyance. The points could have been answered (though whether that would have been to people's satisfaction is another matter) but it always seemed that it would be tactically counterproductive to do so, given the objective in mind, as it risked inflaming the situation. Now is not the time to start on an exercise in self justification.

The lecture and notes are what they are, and had the purpose that they had.

 

[Jonathan Edwards]

It is a pity that Brendan has not joined us, although I can understand why he might not put his head above the parapet. I did not manage to listen to the whole talk but from what Trish says about what he says about the RFH outbreak it seems as if he may not yet have peeled back enough of the skins of the onion to get to the juicy parts. The debate about post-viral epidemics is very tangential to the more important issues about what the core of ME/CFS is. To get to a level of philosophy of medicine that actually does work in terms of making progress in understanding we need to have the sorts of debates that go on both here and in the colloquium at IiME meetings between researchers. The ME/CFS distinction becomes rather irrelevant once one gets down to what he is really interested in - causation of disease.

He could always email me at jo.edwads@ucl.ac.uk as someone suggested.

 

[trishrhymes]

It is a pity that Brendan has not joined us, although I can understand why he might not put his head above the parapet.

I've been in touch with Brendan on Twitter. He thanked me for the links I sent him and says he is happy to engage with us and is busy today but hopes to join us tomorrow, though I guess that might be delayed by him having to go through the application and approval process to join PR.

 

[Snowdrop]

Hi Val I wonder whether you could just clarify that. Yesterday I was surprised by this comment, as I took it to mean that you sided with those other two in their personal attack on me. That was the "abuse" to which I referred, though that may not have been obvious.

A new day suggests that this was not your intent and that you were merely saying that it is fair to comment on the work under discussion, a view with which I have no problem.

I would wish to confine the damage, if possible.

If the comment regarding abuse was directed at me then I would like you to consider this point. I have been sick all my life to varying degrees. And now more profoundly in the last decade. ME, POTS, Fibro, I also have tinnitus which I've had for decades and is getting worse. I am always in some degree of pain. I don't sleep well. AND often these days when I post I get to the point. Perhaps it might be viewed as rude but I don't think it rises to the level of abuse. But we could let the moderators decide since that would be a violation of the forum rules and if you feel this way you should use the report button.

You are still only engaged with this thread by responding to the 'tone' of the messages not their content. I look forward to discussing in further detail exactly what B Clarke has brought to the discussion of ME that is new.

My position again, is that his uncritical acceptance of the Wessely school psychosocial view is not amenable to a compare and contract type discussion as the W&co position have no evidential facts and their position is rooted in politics. Perhaps you could also answer in response to having put up the video for our edification; have you been following the biomedical science research that is being discussed here, particularly the Invest in ME conference that was in London and the Symposium that just happened in Palo Alto.

Please forgive my tone as it is blunt and to the point. I don't have the energy to edit and change my wording for the benefit of coming off as more user friendly ATM.