Michael Sharpe skewered by @JohntheJack on Twitter

Ahhhh, well, that explains it then. He reacted in a cognitively unhealthy way to a 'minor' health event - not saying tinnitus is nothing - i have it quite badly & it can be miserable at times, but it's not exactly rocket science to avoid focusing on it.
But he did focus on it, he obsessed over it & went into fear/avoidance mode.

Therefore that must be what everyone with ME/CFS is doing. It looks very much like he's read the BPS crap at some point, allied it to his experience & thought '"f course!!, that makes sense - thats what happened to me!!" .... so therefore that narrative must be accurate. His experience is what everyone is experiencing, if he catastrophizes then we all must be.

This is so infuriating. I do not catastrophize about my symptoms, at all, i never have. Even at the beginning when I was seriously ill in hospital & a brain tumour was suspected, i was sure whatever it was wouldn't be life threatening & they'd treat it quite easily, i was the one reassuring everyone around me.

I catastrophise about other, specific things at times, we all have our weaknesses, but never about my symptoms & it really gets up my nose that they all have just decided that thats what i'm thinking... & if i say i'm not i must be in denial, because i must be in their view.

 

That's it.

When I started having tinnitus (at a young age) I was shocked and concentrated on it. I had problems with sleeping. So I decided to ignore it. If you can't ignore it, listen to something else (music, a breeze, birds,...).
I can imagine there is tinnitus so severe you can't ignore it anymore.

 

I got tinnitus very young. My mother used to tell me off because I'd get up in the middle of the night, sure the TV had been left on. In those days when the channel went off air they transmitted a high pitched noise. Or maybe the fridge door was open.....

Eventually, I learned to live with it and most of the time ignore it.

Given that I was able to learn to ignore my tinnitus and that, in the early phase, I tried to ignore the symptoms of my ME, then by his logic, I should have gotten better. Instead, I got worse.

Volkt is an arrogant ass. Many, many people live with tinnitus. His experience is nothing special. To make himself feel special he tries to inflict his homespun, poorly thought through philosophies on other people living with a seriously debilitating disease.

Therapist heal thyself.

 

I think this account is from someone in Norway. They follow several Norwegian accounts, some of which only produce tweets in Norwegian.

Perhaps it is Vogt himself? Although not necessarily. I understand that there is quite a strong BPS contingent there.

The account is interesting to browse, because it retweets a rather mixed collection of tweets, including some from MECFS patients who aren't pro-BPS but are angry with ME advocacy generally, for their own personal reasons (I'll let you look at the names for yourself). A sort of my enemy is your enemy type thing. Its seems that, if you're pro BPS, or against patient advocacy, you're in!

The result is a narrative that is mostly focused on undermining patients' views and patient advocacy, much more than it is about promoting the BPS alternative.

https://twitter.com/cfs_research

 

Mine fluctuates somewhat, but it is severe - if by severe you mean loud and continuous. It prevents me from hearing the doorbell or conversations and music which are quieter than the noise in my ears. I hear the tinnitus but I rarely focus on it, mostly it’s just there. A bit like people who move to the city get used to traffic noise and don’t really hear it anymore. If I do focus on it I try analysing it. Mine consists of a variety of different pitches, at differing volumes and different in each ear.

I guess I don’t really understand the distress that it causes some people

 

I'd call it severe if it is louder than your doorbell. It sounds terrible. I am so glad that you manage it! (Gives hope, too, in case if it gets worse.)

 

Changes in bold are mine are for emphasis on ludicrousness:


"Listen to those who have been gay" 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 sexuality by so-called medically unexplained, often called functional disorders. Homosexuality 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 healthy
- Why should gay conversion 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 hetrosexual, 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 homos. 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 gays 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 gay. Then they are told that they are well-behaved. Giving gay people legitimate hope may well be good social medicine.

 

I would think that from our good-science perspective, it would be extremely sensible for someone very clued up from our side to talk to this person. It would either turn out that we've been wrong all along (extremely unlikely I think!), or we could get to the bottom of why these supposed success stories exist. My guess would be mis-diagnosis. We need to understand so we can report further, otherwise these folks are going to muddy the waters terribly during a crucial time - probably the intent. As a science based forum we need to address things like this. But anyone (possible more than one) talking to this person has to be really switched on, to ensure the right questions get asked, the need for some of which may only become apparent during a meeting. Carol Monaghan could not be expected to adequately fulfil this role in all fairness, as I'm sure "CFS Research" is completely aware - and unfair.

 

People like this should be engaged I agree.

Even if this person has recovered, their story whatever it is, does not form part of the scientific literature that forms healthcare policy wherby for 30 years all of the so called top experts have failed to prove the efficacy of their treatments. The ones that we are all subjected to.

If this person is claiming to have recovered using CBT GET we already have the scientific evidence that such claims are bogus.

I'm pretty sure I could go online and find people who claimed to have cured themselves of cancer using tumeric or baking soda or by drinking green juice or urine or probably even their own form of mindfulness/CBT...and...?

 

We know the bottom of the success stories. Some people get better and it is highly likely that some of these will have had some CBT or GET shortly beforehand. We expect these stories to exist. But as anecdotes they provide no evidence for causal link between treatment and improvement - the whole reason why we have double blind controlled trials.

I am not sure there is a lot of point engaging with someone like this. It is of anthropological interest to observe people like Sharpe and Vogt and Gunderson and 'CFS research' huddling together with their inability to understand basic scientific methodology and their need not to be disagreed with but it would be pointless to join in I think.

I don't think this person is a scientist. Scientists do not use the term 'researcher' and certainly not published researcher. It is a bit like saying 'I am a very grown up six and a half year old'.

 

I think he's the person known by the Wikipedia username "sciencewatcher".

He wrote this article http://www.scirp.org/Journal/PaperInformation.aspx?PaperID=67193

With friends like this, who needs enemies.

 

Why engage cfs_research at all?

When chatting with a social group, if a random person keeps appearing uninvited and calling us stupid, we would not engage with them.

You don't owe them any of your personal attention at all, especially when they show bad faith and lack basic civility. My analysis of them is that they are an evangelical timesink. Sure, you could debate the Jehovah's Witnesses who keep interrupting your day too, but it's not a wise investment of time IMHO.

 

I detect a pattern with some of these folk such as Vogt and some of these twitterers:

They seem to believe that their own subjective experience is a Universal Truth applicable to all mankind.

It strikes me as some sort of psychological issue where they need to put their own experience above everyone else's to validate themselves, rather than just consider that maybe, just maybe the experiences are not the same.

Making a mountain out of their molehill as it were.

 

I think they're just unwilling to seriously consider the possibility that the effectiveness of the therapy might be an illusion. In their mind, they're competent and an expert and that makes their observations and speculations reliable and they need not concern themselves with regression to the mean, the human tendency to find patterns and correlations in random noise, and biased self reporting.

 

This reminds me of yesterday when I got a cold call stating that I had been involved in an accident that wasnt my fault and was that correct.

I promptly answered saying, "yes when I was 7 I was on my skateboard and my friend was coming the other way on his grifter and he sped up just as Mrs Jones came around the corner with her shopping......

I got a quick thank you then I was hung up on, so maybe engagement does work sometimes?

 

Yes. Who if I remember correctly published his theory on stress in CFS in a pay to publish journal

 

The treatment of CFS according to Mr Jameson: finding enjoyable activities and believing in your ability to achieve your goals.

 

Interesting development

https://twitter.com/user/status/1002502628419473408

 

https://twitter.com/user/status/1002569728748113920

 

https://twitter.com/user/status/1002577052808118273


I think this is a key point in the failings of the PACE authors.