Peter Tatchell: stigmatisation of ME/CFS #PACEtrial campaigners similar to what he faced

[Esther12]

User9876 posted this in another thread.

https://twitter.com/i/web/status/772035205695672320

Pretty amazing to have Tatchell comment on this. Not sure how widely recognised he is internationally, but in the UK he's very well known as a campaigner first for gay rights (back when this was an unpopular cause), and more recently for a range of human rights causes, and freedom of speech issue.

Really great to see such a genuine legend of activism on side!

After all the dodginess with the science, I do think it's the way they've tried to stigmatize critics is the thing that people most easily recognise is unacceptable. It is so similar to how other groups have been mistreated in the past.

 

[user9876]

I think the LGBT community suffered from a lot of prejudice from psychiatrists in the past. We should remember that being gay was only removed from the psychiatrists DSM manual in 1973.

Now of course they try to put DSM entries in for illnesses that the medical profession don't understand calling them 'functional syndromes' or MUS or bodily distress disorders. This allows they to keep people like Karina Hansen locked up in denmark.

 

[worldbackwards]

I think the LGBT community suffered from a lot of prejudice from psychiatrists in the past. We should remember that being gay was only removed from the psychiatrists DSM manual in 1973.

The history of aversion therapy is bloody horrible.

 

[halcyon]

https://twitter.com/i/web/status/772119294868086784

 

[Snowdrop]

I have sometimes been inclined to wonder: Even if we supposed that electroshock therapy and aversion therapy worked, what kind of mind comes up with such a barbaric idea in the first place to test people on the possibilility it might prove useful and even after it does seem to thinks it's OK to go around doing this to people and is eager to participate and promote it? Wouldn't a sane person say let's explore many other possibilities first before we go there?

 

[barbc56]

Interestingly, Electric Shock Therapy is not the same as what is shown in One Flew Over the Cuckoo's Nest. It's used as a last resort for intractable depression or when it's dangerous to wait until medication kicks in.

There's a strict protocol involved before using ECT and the benefits have to outweigh the risks. It's not clear why it works and there is some controversy over how effective it really is.

Aversion therapy is used to change behavior and for the most part, considered an ineffectual and unethical form of therapy. ECT is a medical procedure which changes something in the brain, but it's not well understood how it works.

This article explains this better.

 

[Luther Blissett]

ECT does not work for very long if at all, (it probably causes post concussion euphoria) and is probably less effective than sham ECT.

Kendell R. The present state of electroconvulsive therapy. Br J Psychiatry
1981; 139: 265–83.

A psychiatrist, Dr. Fink, writing in the Journal of ECT (June 2014) had this to say of patient complaints;

“Complaints of persistent memory loss in otherwise well-functioning individuals after recovery from a psychiatric illness through ECT are best viewed as a conversion reaction or a somatoform disorder.”

Here's a description by the first Dr to use the 'treatment', Dr Cerletti;

As was our custom with dogs, Bini and I fixed the two electrodes, well wetted in salt solution, by an elastic band to the patient’s temples. As a precaution, for our first test, we used a reduced tension (seventy volts) with a duration of 0 2 second. Upon closing the circuit, there was a sudden jump of the patient on his bed with a very short tensing of all his muscles; then he immediately collapsed onto the bed without loss of consciousness. The patient presently started to sing at the top of his voice, then fell silent. It was evident from our long experience with dogs that the voltage had been held too low.

I, bearing in mind the observations with repeated applications of the day before upon pigs, made arrangements for a repetition of the test.

Someone got nervous and suggested whisperingly that the subject be allowed to rest; others advised a new application to be put off to the morrow. Our patient sat quietly in bed, looking about him. Then, of a sudden, hearing the low toned conversation around him, he exclaimed – no longer in his incomprehensible jargon, but in so many clear words and in a solemn tone – ‘Not a second. Deadly! ‘

The situation was such, weighted as it was with responsibility, that this warning, explicit and unequivocal, shook the persons present to the extent that some began to insist upon suspension of the proceedings, Anxiety lest something that amounted to superstition should interfere with my decision urged me on to action. I had the electrodes reapplied, and a 110-volt discharge was sent through for 0.5 second. The immediate, very brief cramping of all the muscles was again seen; after a slight pause, the most typical epileptic fit began to take place. True it is that all had their hearts in their mouths and were truly oppressed during the tonic phase with apnea, ashy paleness, and cadaverous facial cyanosis – an apnea which, if it be awe-inspiring in a spontaneous epileptic fit, now seemed painfully never-ending – until at the first deep, stertorous inhalation, and first clonic shudders, the blood ran more freely in the bystanders’ veins as well; and, lastly, to the immense relief of all concerned, was witnessed a characteristic, gradual awakening ‘by steps’.

Edited to add that I'm criticizing the science behind ECT and not Barb for mentioning it.

 

[alex3619]

This article explains this better.

Even that article acknowledges a history of abuse. ECT was extensively abused in the past, and today its claimed to be more ethical, but it has been used on people against their will in our lifetimes, and given the diagnostic failure that is common in psychiatry I would not want to be sectioned in a hospital that considers it an acceptable therapy.

 

[daisybell]

What is it with psychiatrists that they really think it's ok to presume that memory problems after ECT are a conversion reaction? Do they really have such little medical knowledge? Frankly, a statement like Fink's above just makes me feel that a psychiatrist should never be consulted for anything... And that's 2014 as well.
You know, you can see the parallel when you get a power surge in your electricity supply and a whole load of fuses get confused and stop working because they imagine that their limits have been exceeded....

 

[Snowdrop]

Interestingly, Electric Shock Therapy is not the same as what is shown in One Flew Over the Cuckoo's Nest. It's used as a last resort for intractable depression or when it's dangerous to wait until medication kicks in.

There's a strict protocol involved before using ECT and the benefits have to outweigh the risks. It's not clear why it works and there is some controversy over how effective it really is.

Aversion therapy is used to change behavior and for the most part, considered an ineffectual and unethical form of therapy. ECT is a medical procedure which changes something in the brain, but it's not well understood how it works.

This article explains this better.

I hear what you're saying Barb, and I understand the difference btwn therapies. I expect that ECT is a last resort and that it may even prove effective in desperate cases where someone will do almost anything but my point really was why would someone come to think that doing this might be something worth investigating. I'm pretty sure all those protocols that are in place weren't there at the start. It makes me think the mindset is one of people being no different from a guinea pig a rat or a frog -- it's the results that count the patient really isn't the issue. It's the idea of delivering shocks to people, that this comes to mind as something to be considered.

 

[Sean]

A psychiatrist, Dr. Fink, writing in the Journal of ECT (June 2014) had this to say of patient complaints;

“Complaints of persistent memory loss in otherwise well-functioning individuals after recovery from a psychiatric illness through ECT are best viewed as a conversion reaction or a somatoform disorder.”

And you are best viewed as one of life's great obscenities.

 

[adreno]

At least get his name right in the title.

 

[Hutan]

In relation to @halcyon's post above - WOW. I think it deserves some re-iteration.

So in 1968 Isaac Marks writes a paper extolling the virtues of electrical aversion therapy for 'sexual deviations' and it is clear that Michael Gelder is a buddy who has worked with him on this therapy, co-writing previous papers. Marks is spouting garbage about how giving someone electrical shocks clarifies relationships between the deviant behaviour and other problems in the patient.

In 1991 Sharpe is writing about CFS and thanks the now Professor Gelder for financial support. And in 1997, Marks co-authors a paper on CBT for CFS with Chalder and Wesseley.

These people, who have carried out clear atrocities, still have authority over vulnerable people.

I've said it before... I suggest that examining the personality traits of the people who choose to label ME/CFS a psychogenic disease and are able to delude both themselves and the patients under their care that their hocus-pocus treatments are helpful rather than harmful would be a much more productive and interesting exercise than trying to define the personality traits of the patients.

 

[Cheesus]

I've said it before... I suggest that examining the personality traits of the people who choose to label ME/CFS a psychogenic disease and are able to delude both themselves and the patients under their care that their hocus-pocus treatments are helpful rather than harmful would be a much more productive and interesting exercise than trying to define the personality traits of the patients.

When the Navaiux study was reported in the Daily Mail. there was a vocal minority in the comments section who were shouting about how it was all a bunch of rubbish and that ME was made up, exists for benefits, all in the mind, etc, etc. I began to reply, but then I figured if they are so deluded that they hold onto those beliefs even after they have read an article detailing unequivocal evidence, then how could this mortal man possibly persuade them otherwise?

Fortunately the weight of public opinion was clearly against them. In order to find those comments you would have to view the 'worst comments' section. These comments were down-voted hundreds of times, with only a handful of up-votes.

We're winning the war on delusion, even amongst Daily Mail readers!

 

[TiredSam]

You know, you can see the parallel when you get a power surge in your electricity supply and a whole load of fuses get confused and stop working because they imagine that their limits have been exceeded....

It's the power surge that these psychiatrists get when they are allowed near patients that bothers me.

 

[Invisible Woman]

Even that article acknowledges a history of abuse. ECT was extensively abused in the past, and today its claimed to be more ethical, but it has been used on people against their will in our lifetimes, and given the diagnostic failure that is common in psychiatry I would not want to be sectioned in a hospital that considers it an acceptable therapy.

I met a guy who was diagnosed with ME and severe (possibly diagnosis of bipolar) depression. At one point he was sectioned. The meds they gave him made him very restless and he'd end up walking up and down the corridor - as you can imagine this did his ME no favours as he couldn't even sit still.

When he tried to discuss this, rationally and calmly, with staff, he was threatened. Basically, he was told: Take what we give you without complaint or we'll say you're not complying and forcibly give you ECT.

Horrific - maybe the folks who have this power should be sectioned and forced to undergo their own "treatments" as part of their training.

 

[Invisible Woman]

A teenage friend of my sister's (mid 70s) was brought to a psych because he was gay. Poor kid had never had a romantic relationship and made the mistake of trying to talk his feelings through with his family. Otherwise a really happy guy whose friends accepted him as he was.

His psych treated him with aversion therapy and he became very withdrawn and depressed. He took his own life. The psych was never (to my knowledge) challenged. It was just seen as another symptom of the poor chap being a troubled soul.

These guys have far too much power.

 

[Deepwater]

ECT does not work for very long if at all, (it probably causes post concussion euphoria) and is probably less effective than sham ECT.

Kendell R. The present state of electroconvulsive therapy. Br J Psychiatry
1981; 139: 265–83.

A psychiatrist, Dr. Fink, writing in the Journal of ECT (June 2014) had this to say of patient complaints;




Is that the Dr Per Fink who locked up Karina Hansen?

 

[Valentijn]

Is that the Dr Per Fink who locked up Karina Hansen?

No, that article was co-authored by a Dr Max Fink.

 

[Esther12]

At least get his name right in the title.

I do know how to spell 'Peter'! Late night typo.