Placebo effect discussion thread

Yep. I agree with Jonathan that while there are myriad things that help with symptoms, it is important to note that it’s very likely that there is absolutely nothing (currently) that helps with the disease as a whole, even in just a single person.

 

Do you think I should write about it @Trish ? Maybe I will blog it one day just for my own satisfaction. Hardly anyone ever reads my stuff though, I am not sure I would be doing the world a service.

Yes I think that is what the nice lady was trying to say but of course she was wrong. Shows how commonplace it is for people to see others' problems as related to character, which is the folly of the BPS perspective. My problem was of my making in a corporeal sense but not because I wanted it that way.

My body is the result of my genes and genes don't have desire, life plays genetic roulette and my roll was happenstance. Affirmations cannot change genetics. I think she was trying to give me what she hoped would help her, which is kind in a way, though misguided and again is what BPS does. She was in fact trying to extricate herself from a difficult, abusive sounding relationship but failing. Even there genetics plays its part. How fragile we are.

The trick of blaming those seeking help or solace for their pain was becoming quite popular around then. Though rudely insensitive, unsympathetic and offensive, that very fact means it has a shock effect which might cause some people to think again about their own responsibility for their situation and their options for changing it, such as walking away! I remember there was a touring self help show from the USA called The Forum who made a living out of it by staying on the move and finding new audiences to upset.

I suppose some people found this cruelty helpful or at least thought it would be helpful to others and it seemed to spread as a meme quite successfully in such circles. The "professional" therapist I went to see and I use that description loosely was far more enveigling but her advice was the same. Of course it echoes the truth of the muse, that we are all alone in a universe of perceptions we create subjectively. So it can be an effective power play over those who have not been there so to speak and are still children at heart but it is not actually helpful if you have faced the truth and have visited them seeking knowledge about a blight like ME because it provides none, just tells you what you know already.

I would prefer it if people just threw their hands up and admit they have no clue.

 

On another thread, we were discussing a guy who might be a 'Rosseta stone' ME/CFS patient:

Such patients may be hard to find, and hard to catch at the moment they flip, but what if Dr Fluge is Rosetta-stone-producing doctor? What if he's such a brilliant generator of powerful placebo effects that he triggers real remissions (because I still don't find those 6-month rituximab remissions plausible as self-delusion)?

Could we get him to run a new clinical trial of a therapy that he genuinely thinks could be a goer, in the hope that we can catch the switch flipping in some of his patients?

@Jonathan Edwards

 

Feeling better, yes, but didn't they report being in remission? I interpreted that as meaning they felt as though they had recovered.

It would be interesting to have more detail about this.

 

It was White and Knoop and in the same paper they said that CBT worked through the placebo response!

 

I think in all these discussions we need to be open to the possibility that a diagnosis ME/CFS is applicable to two or more very different sorts of illness - that just tick the same boxes.

 

Quite a lot of us might be in those subcategories, though. I remember it being said that ME/CFS might be a dozen different illnesses. Whoever those people are who are going into 6-month remissions, if they were given an ME/CFS diagnosis, they're presumably in an ME/CFS subcategory and need investigating.

 

Use of placebo controls in evaluation of surgery

A fascinating landmark study of placebo surgery for knee osteoarthritis

 

I also remember Wessely replying to someone commenting on this about PACE that "the placebo is one one of the most powerful interventions we have". Although he would likely say something else to different audiences, then and now.

Which is a comically inept thing to admit: the best we can do is to amplify the very noise that serious researchers try to eliminate. Basically: our very best is the null comparator. We are NULL.

 

What would you investigate, @Sasha? We haven't found anything to distinguish people with ME/CFS from healthy controls much so where would you start separating two groups both with normal tests? If a significant proportion of people with ME/CFS fell into a group that did have abnormal tests we should have seen that.

I rather doubt that many people on S4ME fall into a group that can suddenly become active for six months, relapse to order and then do it again. But it looks as if some can and I can think of one or two high profile ME/CFS advocates who seem to go through these phases.

If you can think of a way to gather information that would be great but I haven't been able to think of one so far.

 

The appropriate context being Milgram and a perspective on obedience and conformism, because people will say what they believe they are expected to say.

Which is why empirical measurement data is a good basis for science and self reporting data is not.

It is comparable to the problem of anthropomorphism in zoology. You have to rule out cognitive bias in the experimental method. Anything less is not credible.

 

Snap! My copy ended up in a charity shop.

 

I don't think we could separate those two groups of PwME in advance. The ideal would be to get people we know go through these phases, or who are likely too (like Dr Fluge's patients!).

 

Citation needed.