Simon Wessely, ME/CFS and Rituximab II: CBT Advocate Explains "New" Stance

[Cort]

"he has done precious little to counter the grotesque misrepresentation of the ME community in the UK media, and one would argue has actually aided it."

Great point. My feeling as well. If ME/CFS is not all in one's head and biology is important why has Wessely not tried to alter the British medical system and the media's stance? Why? My guess is because it has served him not to...

 

[Cort]

Why should we care what SW thinks these days?

He held things back in the past, but he has less power these days than people seem to give him credit for.

Over-analysing SW's comments isn't going to advance the science, nor build research capacity for biological focused research.

Yes he has harmed us in the past, but we need to move forward and focus on something more constructive.

 

[Cort]

it's not a personal attack on Cort at all - just an attempt to show him what Wesseley is like, because that is what Wessely has been saying to patients with ME. He doesn't express it quite as blatantly in writing but English doctors have understood his message. If you see it as a personal attack on Cort then you should see Wessely as personally attacking everyone in the UK who has CFS or ME.

Wow Tatt, I thought that was a quite personal attack on Cort, who spends hours of his time delivering all sorts of information to us on ME and FMS. Please do not disrespect him in that way. No need to make this personal. Remember he is on your side!

Thanks Martinigal but I didn't view Tatt's as a personal attack - just as an understandably forceful response - which I fully expected. In fact I expected more forceful responses than that! I knew I was wading into a field lined with land mines when I raised this topic.

I appreciate your concern though.

 

[tatt]

"he has done precious little to counter the grotesque misrepresentation of the ME community in the UK media, and one would argue has actually aided it."

Great point. My feeling as well. If ME/CFS is not all in one's head and biology is important why has Wessely not tried to alter the British medical system and the media's stance? Why? My guess is because it has served him not to...

Wesseley is the cause of the media's stance. He did say to you that he talks to journalists when reputable scientists generally dont.

In the uk, Cort, you'd be very lucky to find a doctor who would listen to your claims that you are not deconditioned. The moment you are given an ME diagnosis you become a psychiatric patient and are no longer listened to. Wesseley thinks he did wonders for CFS because he said you must listen to and sympathise with these people because they do have physical symptoms. These are caused by deconditioning, that is caused by an irrational fear of exercise and/or depression and you can cure this by CBT to overcome the irrational fears and GET to recondition them. But to win their trust you must listen to them. Later when he reviewed his work he said it had stood up pretty well but he underestimated the effect of anxiety. He still doesnt really want to accept that there is any underlying physical cause of this, hence trying to undermine the rituximab trial by saying its not a double blind trial (while omitting to ention that PACE wasn't either).

Unfortunately trying to maintain normal activity levels may be helping to keep you sick. Wearing a heart monitor showed me that when I was still pretty ill walking upstairs at a normal pace was enough to send my heart rate soaring. CBT can actually help people accept that they cant maintain previous activity levels until they recover a bit and GET can show them how to keep within the level they can sustain so it can help a few people. It might help you a bit, although as you've said before ( I think?) that you're an anxious person maybe extra magnesium would help more. As smeone said elsewhere these are bandaids rather than fixing the real prblem but when you have a bad cut and stuff getting in it is causing you pain a band aid makes you feel a whole lot better and can help you heal.

 

[San Diego]

Nobody, save those in the UK, wants SW hung out to dry more than I. He’s a disgraceful snake and he’s repeatedly proven himself a danger to ME patients worldwide. His beliefs have effected disability determinations, court decisions, family & friends' attitudes toward ME patients, and more. They belong in the middle ages, along with lobotomies and tossing MS patients in swimming pools to prove that they can function if they want to function.

That said, I do think you are right in reaching out him an open and civil dialogue, @Cort. Because he is so erroneously and enormously influential, and because of his megalomaniacal personality, this is the only way to actually engage him in a reasonable discourse. In doing so, you may eventually get him to publicly state that ME/CFS is indeed a physiological disease as you allow him the grace to change his stance. "Attacking him" (as WS - who apparently has the maturity level of a 4 year old - views any opposing beliefs) just causes him to double down on his dangerous stance and further “prove” that ME patients are an unstable bunch.

Most MD’s worldwide believe exactly as he does. They just aren’t as vocal and fortunately aren’t as influential.

I’ll be eager to see where your conversation with WS goes. I’ll also be eager to see his public statements from the past follow him indefinitely and discredit him in a tidal wave of shame.

 

[Beatriz]

Well, I can definitely remember Wesseley saying that ME/CFS is no more a "physical illness" than depression or schizophrenia, [etc]

This and a previous post got me thinking. Lets keep friends close, enemies closer. Use his high profile, call him on his retraction, vagueness, hedging whatever, all of us keep a keen eye on his activities and utterances. Challenge the BMJ as suggested. I would put some money towards a lawyer for that. I think these are good ideas. I guess we all do what we can, but after 32 years I declare myself an impatient patient.

After 10 years illness I had 12 months success on MgSO4 injections. Then it all went pear-shaped again. That experience is the reason that I know for sure that I personally have a completely physical illness that has a lot of psychological and mental health issues as a consequence. Every time I doubt myself, I remember back to that year of grace. We are all subtly physically and biologically different, the many possible causing factors could be working in different ways on different folks. I see great hope in many areas, and a good bullshit meter is helpful. All those naysayers need to be held to account. Cort, greatly appreciate this forum and site. Thanks to all for whatever you manage to do.