Michael Sharpe skewered by @JohntheJack on Twitter

He is searching for people who have read the paper to explain it to him.

 

Thank you @dave30th, that was helpful.

 

Looks like it:
https://twitter.com/user/status/1001508438218821632

https://twitter.com/user/status/1001532113643073536

https://twitter.com/user/status/1001533019918946304

https://twitter.com/user/status/1001533491031441415

Never mind the ethics and the details of the measures used - our figures look good to us, do you like the pictures graphs too?

 

So Mr. Sharpe isn't very honest today. Indeed, they propagated that CBT/GET are treatments for CFS and ME - however the illness is defined, in fact. Today, he peddals back; now he says only for those whose main symptom is "fatigue" (as we know, even that isn't correct), and he differentiates between ME and CFS.

 

It continues ...

Note that Sharpe is posting at ten past midnight.

 

Sorry kd, I think it is a statement of reality alright.
Who is kd?

 

Why didn't you become a scientist then.

 

He probably has to stay up that late to follow Trumps twitter feed.

 

To protect his house of cards by obfuscation so he can keep screwing us over with it (or in his mind keep heroically treating us)

 

kd describes him/herself as "chronically ill with CFS/ME".

He/she is very pro-Vogt, and other BPS-friendly sources, but also retweets the odd thing from the likes of Chris Ponting. If I had to guess, from looking at the activity on the account, I'd say it was a patient who found CBT and/or GET helpful, is pro the FND approach, and who really doesn't like ME "activists", which seems to mean anyone who challenges PACE etc. Eg, kd retweeted this,
https://twitter.com/user/status/977283176220495873

 

I'm not so sure if kd is a patient who profited from GET/CBT... See the "special wording". But he/she is definitely a fan.

 

Yes, specific sockpuppet aroma wafting from that account.

 

I was just about to write that too!

 

I'm missing it then - I'm curious to know, how can you tell?

 

I've always worried about CFS criteria being a wee bit of a red herring, tbh. It gives them a get-out clause ("oh we weren't studying ME anyway..."), which I don't think is true, particularly given the reports from those in the trial. Yes, the study population is massively heterogeneous, but this is often used to suggest that some people (without ME) benefitted from CBT/GET - and I just don't think the data says that at all (over and above placebo effects etc etc). It's made more confusing because we know from the TSC/TMG minutes that they were at least considering widening the net to include fibromyalgia pts. But very few ppl ever get close to what would be termed "normal" scores (>85 PF), as we know from the protocol-defined recovery analyses. If anything, their London ME pts do better on PF than International CFS pts (figure 2, 2011) - but without seeing the data, we can't check this, and we can't see why that might be (I suspect drop-out bias).

So, what I'd be interested in knowing is what the subgroup stats say about drop-outs in the London ME grp vs the rest. Even more interesting, would be info about missed or postponed sessions - but they probably weren't that diligent with that, given how cavalier they were with actigraphy.

We do at least know that data were not missing at random, and that those who dropped out or were LTFU were posting worse scores.

Sorry - this has gone a bit off topic.

 

Oh that's interesting, I hadn't grasped that. Excuse my ignorance, is that not going to skew the results then, making them seem better than they were?

 

Not uncommon in the psychology field to cherry pick, as I've heard.

 

I don't think they even had to cherry pick. If you design a study badly enough, the cherries will pick themselves!

 

I guess I’m far from alone wondering what drives people like Vogt. He obviously has his medical exam, often calls himself a media-doctor, but still a man with no clinical experience, nor theoretical knowledge of ME. Despite this fact, he holds extremely strong opinions lacking all sorts of nuances, mainly saying - you can heal yourself. He is a strong defender of the “prominent” people in U.K. But is that all that is to it, just taking side and little else?

I guess not, and I do think I have a clue now after reading an article, a sort of portrayal in the medical journal a couple of moths ago. The first part is quite good and I do think Vogt has some interesting philosophical aspects on medicine in large up against new technology and things like that. And then there is more troubling when we get to know a little more about Recovery Norway, which he has established. I think it is a kind of Facebook-group promoting “success-stories”, a dash of PACE, and a little LP.

What I found interesting reading was that Vogt have had/has tinnitus, really bothered in his early 20’ies. I know very little of tinnitus but feel sorry for him. In retrospect he is obviously better and what is very interesting is when he describes the caothic years that was almost driving him mad. He explicit says himself that he, was catastrophizing to a great extent. The perfectionist in him couldn’t deal with this.

And what happens then? Looks like he takes this personal experience from tinnitus and transforms it over to ME. I guess we always can find similarities and general advice from different diseases on how to cope and things like that, but still. It is quite extraordinary that one man and his own bad coping with a whole different disease and obviously very little knowledge of ME, should drive him to his conclusions and strong opinions. Vogt will never be taken seriously on ME, and I think his history underscores that quite significantly.

Here is part of the text to read. Translation by Google, so could be so so.

Listen to those who have become healthy

"Listen to those who have been fresh" was the headline of a chronicle in Aftenposten in September. Henrik Vogt was a writer with 45 members in Recovery Norway, a network for patients who have become healthy by so-called medically unexplained, often called functional disorders. Chronic fatigue is the most known of them. The entrance fee for Recovery Norway is a patient experience. The aim of the network is to contribute to hope and understanding in a situation where there is a lot of darkness and theories that you are affected by bodily defects. Henrik Vogt is the network's initiator and one who has become well

He has a past in rock band. 14 years old, he really discovered the AC / DC hardrock band and bought all the releases. In the song Thunderstruck sings AC / DC «Thunder, Thunder, Thunder, Thunder / I was caught / in the middle of a railroad track». Henrik Vogt knows how it is. For a short period of time, at the start of the 20's, he was locked in an earsus that was driving him out of the mind. "The ear sores came while I first started taking medicine for a very stressful period. Occasionally I was walking with ear plugs out of people, something that is not uncommon for those who struggle with this. You think you have to protect your ears. I stopped listening to music, one of my greatest pleasures. All the time I thought "Is the sound there now?", "Is that the sound from the dishwasher or from my ear?". I got disaster thoughts. The perfectionist in me said that "you can not live a life with an imperfect body." It sounds ridiculous, but it was claustrophobic. Fortunately, I did not get to an ear nose throat specialist who would at worst have linked me to understanding myself as a patient with an ear injury.

- Then you got well?

- I can still hear the sound. But it does not have the same meaning. All people have sound in their ears. How did I get well? On the phone directory's Yellow Pages, I highlighted "tinnitus". When I found a name on my own address, I wondered if I had become psychotic. But the only one who ran with this, Atle Rønning Arnesen, actually lived in the floor below me. I slipped into the slippers and hit a wise man. One conversation was enough. He demolished the problem, and then he said, "Start for God's sake to listen to music again!". It's basics to make the brain change focus and turn a vicious circle of fear and increasing symptom focus.

- Why should healthy patients organize themselves?

- Patients are on an understanding that is important. It is the source of good research. Patients often disappear from the radar when they get healthy, they only want to live their lives in peace. In addition, they are subjected to sanctions, some of them harassment, from those who are still ill. This will make a huge blind spot in patient involvement.
Both researchers and health policy makers get a skewed picture of the conditions this is about. The sick sets the agenda for what to research and what measures should be supported.

- What reactions has the network met in the medical profession and the authorities?

- Very few. Maybe we do not fit so well. I am very provoked by people - both colleagues and patients - who actively let us down. First, these patients are told that they are ill. Then they are told that they are well-behaved. Giving healthy people legitimate hope may well be good social medicine.