David Tuller - Trial By Error: A Post About Andrew Lloyd

I went to a clinic which used this 'reasoning' (without any scientific basis) for various kinds of physical disability due to illness and injury, to try to coerce patients into doing more. The therapists said (verbally) that the roots of this 'therapy' are in aversion therapy... though this was not written down in the materials provided. They termed it 'graded exposure therapy'.

The clinic worked exactly as @Trish described above in post #50 and was worthless for someone with ME and for most others too.

 

A very good GP who we had great trust in, once told us his peanut-allergic daughter did that, and it very nearly killed her, so he could never in all good faith ever recommend it again.

 

In the United States, we still have similar desensitization thinking, but it's slowly changing. The Mayo Clinic website currently has this nonsense:

 

Gradually increasing the intensity of your exercise over time may help reduce your hypersensitivity to exercise, just like allergy shots gradually reduce a person's hypersensitivity to a particular allergen.

Now that is pure bullshit. Another one for the notebook.

 

Any kind of timescale for the notebook?

 

Yes

 

Allergy shots did nothing for me. Tried them for 2 years and gave up, still sneeze near a hazel tree. Fortunately the doctor didn't blame me, call me vexatious or militant, set up a lobby group to misinform the press about me, or have me locked up. Quite a decent chap really.

 

You should be a software engineer!

 

@Bill Thanks for your comments. No harm done, and I accept that we can disagree about whether those particular phrases were an unwarranted personal attack. Thanks for raising the issue. As I said, I think about any criticism. In this case, were I to do it again, I would likely have made a similar point but phrased it somewhat differently.

 

I feel a similar regret in my use of the term ass-hat, as it reflected a frustration with some behaviors I consider either cruel or over-the-top that you had nothing to do with. Just bad-timing on your part

I do worry that we should not allow our anger and frustration to get the better of us. That includes me.

Again, all the best in your tour down-under and thanks for helping fight the good fight.

Bill

 

This is a very interesting comment and my personal experience with CBT and GET (for different illnesses) has brought me to the same conclusion. It is treatment for exercise phobia. GET is absolutely Graded Exposure Therapy. It just is. The methods are the same. The practice is the same. The CBT is the same for a phobia. The only difference between the two is that the CBT is the theory and the GET is the practice. Usually for a phobia they are combined, but in PACE they were seperated. They still expected them to show enough difference from the SMC and APT arm, as you would if you were trying to treat a phobia. It also explains why they don't see anything wrong with subjective measurements. With these treatments for phobia, you don't get objective results before the subjective ones.

This also creates my hypothesis that the BPS school only admit a possible biological cause as a necessity to explain (although I've never seen it asked) cluster outbreaks. By what other means could you try to explain cluster outbreaks of abnormal illness behaviour/beliefs without a shared event?

 

Ah I say (stroking my chin), but does mass hysteria have an external cause? If not, how can it manifest in clusters? Either it is an individual phenomenon, or not. Note that in the cases of 'mass hysteria' the BPS school use, there is still a shared external event, even if they don't think the reaction to the event is reasonable or proportionate.

If a group of people do not interact with each other, how can the cluster form? By chance? How is that statistically likely?

 

Brain waves ... that'll be it .

 

I think it could be the other way around. Lloyd was well known to PWME and CFS in Australia and New Zealand and to an extend abroad as well. He's in Osler's Web as an example.

It was the Dubbo study that possibly gave the results he didn't expect.

Before Dubbo his views were well known with patients. He hasn't changed.

 

I was going to reply to this comment yesterday, but I hadn't made an account here yet and it took some time for the mods to approve it. Which is just as well, because the fire has gone out and the resignation set in, so perhaps I can express what I felt in a more deliberate way.

This community has a strong culture, that seems to stretch across generations of patients and advocates, of being, in my opinion, overly non-confrontational and patient and bureaucratic in approach. There's this pervasive pressure for patients and advocates not to be seen as emotional or angry or engaging in any way that's not calm and collected and cautious and utterly circumspect. And I understand some of the reasons why that is, the gaslighting, the claims of death threats, the way we're perceived, etc.

I felt this necessity in the first couple years that I was sick, but as illness set in and the shine wore off the apple of my respect for government and institutions and faith that they would get it right, if only things were explained properly, I came to realize how thoroughly we live in the box they've made for us.

And reading this concern about saying the wrong thing, all I can wonder is whether this community will ever call a spade a spade. What the BPS crowd has done to this disease is so profoundly wrong, so unethical and so immoral and so sustained that they cannot and should not expect decency. And patients or advocates don't owe it, no matter how friendly the delivery. People that espouse these viewpoints should be drummed out of town, tarred and feathered, set up in stocks and pelted with tomatoes, and that's frankly the least of what they deserve. We should have t-shirts that say "Fuck Simon" and mugs that say "National Disgrace" below Trudeau Chalder's face.

It may not be for every advocate in every role to scream and rage, but can't some patients speak with more than utter care and circumspection? And hasn't David earned the right to speak brazenly if he so chooses (leaving aside the question of whether what he wrote even qualifies as that)?

Whether it's tomorrow or in five years or twenty, I will die amazed that the BPS crowd and an unthinking, unreasoning medical community has been so successful in cowing a whole community of desperately ill patients into being so pussy-footed. Patients are dying, and have been dying for decades, and we're still worried about what "they" will think of us, as if it's an intellectual argument waiting to be won, rather than dogmatism and small-mindedness and greed that needs to be subverted and overcome.

 

In my opinion, ME/CFS needs a helluva lot more ACT UP, and a lot less calm deference towards those that do us harm.

Silence = Death (or at least something at times resembling death).

Edit: How about "Silence = A Living Death"