Letter to BMJ: "Medical gaslighting: to say that invoking psychological symptoms is equivalent to dismissal is reductionist", Michael Sharpe

[DokaGirl]

The speech bubble is small, but reads "You know these people really just do it for the attention."

Excellent!

 

[SNT Gatchaman]

Just to be pedantic, the punctuation is important

"Fair cop Guv."

 

[Trish]

I have just read Ed Yong's latest excellent article about Long Covid and other post viral illnesses including ME/CFS in The Atlantic (article here thread here).

Michael Sharpe, if you are reading this thread, please go and read that article and have some humility to accept that your psychosomatic theories and exercise/CBT treatments for ME/CFS are just plain wrong. The theories have no basis in reality and the treatments don't work and cause harm.

Think of the harm you have done.

Find some humility and apologise for the harm you have done to thousands, probably millions of sick people. Use all that access you seem to have to the media for your whining about being attacked by militant patients to shout it from the rooftops - I WAS WRONG.

 

[TruthSeeker]

I recall reading some years ago that Michael Sharpe stated that "ME should not have been
mixed-in with CFS".?

If this is true? Does anyone know WHEN and WERE he stated this?
I think it is important for actuate records for
reference.

 

[Sly Saint]

I recall reading some years ago that Michael Sharpe stated that "ME should not have been
mixed-in with CFS".?

If this is true? Does anyone know WHEN and WERE he stated this?
I think it is important for actuate records for
reference.

I think it might have been in a twitter exchange, possibly on this thread
https://www.s4me.info/threads/michael-sharpe-skewered-by-johnthejack-on-twitter.3464/

or this one
https://www.s4me.info/threads/michael-sharpe-on-twitter.18275/

 

[rvallee]

I recall reading some years ago that Michael Sharpe stated that "ME should not have been
mixed-in with CFS".?

If this is true? Does anyone know WHEN and WERE he stated this?
I think it is important for actuate records for
reference.

Sharpe does like Wessely and says whatever is convenient to convince the people he's talking to. He goes back and forth with word games. His talk is as cheap as it gets.

 

[Lilas]

I have just read Ed Yong's latest excellent article about Long Covid and other post viral illnesses including ME/CFS in The Atlantic

Sorry to make a little diversion, but I also found the article very good. It focuses mainly on brain fog, among other things its understudied and inappropriately tested nature, its devastating impacts at the professional level, the disbelief of the medical profession...

And because “there’s not a lot of humility in medicine, people end up blaming patients instead of looking for answers,”

I recognized myself so much in the testimonials about disastrous consequences of brain fog. Before literally no longer be able to get out of bed one morning, I worked 1 year very sick with significant cognitive issues. I had an intellectual profession, I noticed my performance decrease significantly without however understanding what was happening to me. I was thinking, through all the other symptoms I had, " How is it possible that I'm 'unlearning', that my mind is less sharp and losing its agility, that I feel like I'm becoming less and less intelligent ?? " It was just hell... When you start having to leave work 2 hours later than normal every day because you can't finish your records on time because of a clearly failing memory, attention, concentration, it is just pure survival.

 

[Barry]

I recall reading some years ago that Michael Sharpe stated that "ME should not have been
mixed-in with CFS".?

If this is true? Does anyone know WHEN and WERE he stated this?
I think it is important for actuate records for
reference.

He has wittered on and off about this down the years, as have others, saying that PACE was about CFS not ME, but when you look at the trial manuals they mostly refer to CFS/ME.

 

[DigitalDrifter]

Isn't it strange how the people who reduce every problem to "wrong thoughts and behaviour" also mention "biomedical reductionism" a lot?

I wonder if he also thinks not believing in misaligned chakra factors or negative orgone energy factors counts as being overly reductionist.

 

[RedFox]

recognized myself so much in the testimonials about disastrous consequences of brain fog. Before literally no longer be able to get out of bed one morning, I worked 1 year very sick with significant cognitive issues. I had an intellectual profession, I noticed my performance decrease significantly without however understanding what was happening to me. I was thinking, through all the other symptoms I had, " How is it possible that I'm 'unlearning', that my mind is less sharp and losing its agility, that I feel like I'm becoming less and less intelligent ?? " It was just hell... When you start having to leave work 2 hours later than normal every day because you can't finish your records on time because of a clearly failing memory, attention, concentration, it is just pure survival.

Your story is markedly similar to what happened to me. When I first got ME, I had no idea what happened. I was in college at the time, and the biggest change was that my mental health plummeted because I could no longer handle the mental load. I also had major trouble concentrating. I had physical PEM too, but I never connected it to my neurocognitive symptoms until I learned about ME, 3 years after becoming ill.
Vaguely thinking something was wrong, but being clueless how severe or permanent was for three years was a very bizarre experience. I knew I wasn't the same person as before, but didn't know to express it. The most striking example of this was late one night in July or August of 2020. I was testing electronics to sell on eBay and needed a video tape. I rummaged around for one and popped it in the VCR/DVD combo I was testing. The content on the tape was rather mundane--a random recording of the local news from 2011--but for some reason, it made so many memories come flooding back. I nearly broke down crying at the thought that I was so much more functioning back then, and in previous years, but I had no idea why. (For context, I was 15 in 2012. I was between my 3rd and 4th years college and 21 when I got sick in 2018, and I was 23 and working as an eBay seller, but doing quite poorly due to my illness, when this happened.)
This is rather autobiographical, but it also links into the main topic of the thread. My belief that my symptoms were mental, my lack of awareness of ME/CFS, and my doctors' lack of awareness of ME/CFS caused me severe emotional stress and made me waste three years of my life. I want to see increased awareness of ME/CFS, and for it to be treated as a biological disorder, so nobody ever goes through the same thing as me.

 

[Sid]

Before literally no longer be able to get out of bed one morning, I worked 1 year very sick with significant cognitive issues. I had an intellectual profession, I noticed my performance decrease significantly

I had an almost identical experience, and it was the most demoralising year of my life.

 

[Sean]

He has wittered on and off about this down the years, as have others, saying that PACE was about CFS not ME, but when you look at the trial manuals they mostly refer to CFS/ME.

Plus they used (a modified version of) the London ME Criteria to select a sub-group of the trial participants.

Of course it was about ME.

Before literally no longer be able to get out of bed one morning, I worked 1 year very sick with significant cognitive issues. I had an intellectual profession, I noticed my performance decrease significantly without however understanding what was happening to me.

Me too. Struggled on in the job for about 18 months, with lots of paid then unpaid sick leave, but had to quit. Then tried more full time, then part time, study for 2-3 years, which was a little bit easier for a while because I had more control over my schedule. But clearly that was not sustainable either, and I was still operating very much sub-par.

At that point I just floated for a few months wondering what the feck was going to happen to me now, before finally getting a diagnosis.

Fortunately my diagnosis was from a highly respected professor of immunology, and the requirements for a government disability pension, while never lax, were less strict then they are today, so between those two factors I was able to get one relatively easy, without having to fight for years.

I feel so sorry for those trying to get one now, in the much tougher regime of today.

 

[Kitty]

It was just hell... When you start having to leave work 2 hours later than normal every day because you can't finish your records on time because of a clearly failing memory, attention, concentration, it is just pure survival.

Me too. I actually worked my entire career with ME brain fog, but the severity fluctuated and what you've written is a good description of the times when my function dropped right off.

When I also developed B12 deficiency, which added memory loss so bad I sometimes couldn't remember how to spell simple words, I realised I was working absurdly long hours in order to keep up and still spending most of the time either putting right my own mistakes or setting up systems to make sure I didn't forget important things. When I had to ring someone on a pretext because I'd forgotten how to find out what date it was (using a phone that displayed the date on the lock screen), I knew I couldn't carry on.

 

[livinglighter]

I recognized myself so much in the testimonials about disastrous consequences of brain fog. Before literally no longer be able to get out of bed one morning, I worked 1 year very sick with significant cognitive issues. I had an intellectual profession, I noticed my performance decrease significantly without however understanding what was happening to me. I was thinking, through all the other symptoms I had, " How is it possible that I'm 'unlearning', that my mind is less sharp and losing its agility, that I feel like I'm becoming less and less intelligent ?? " It was just hell... When you start having to leave work 2 hours later than normal every day because you can't finish your records on time because of a clearly failing memory, attention, concentration, it is just pure survival

Your story is markedly similar to what happened to me. When I first got ME, I had no idea what happened. I was in college at the time, and the biggest change was that my mental health plummeted because I could no longer handle the mental load. I also had major trouble concentrating. I had physical PEM too, but I never connected it to my neurocognitive symptoms until I learned about ME, 3 years after becoming ill.
Vaguely thinking something was wrong, but being clueless how severe or permanent was for three years was a very bizarre experience. I knew I wasn't the same person as before, but didn't know to express it. The most striking example of this was late one night in July or August of 2020. I was testing electronics to sell on eBay and needed a video tape. I rummaged around for one and popped it in the VCR/DVD combo I was testing. The content on the tape was rather mundane--a random recording of the local news from 2011--but for some reason, it made so many memories come flooding back. I nearly broke down crying at the thought that I was so much more functioning back then, and in previous years, but I had no idea why. (For context, I was 15 in 2012. I was between my 3rd and 4th years college and 21 when I got sick in 2018, and I was 23 and working as an eBay seller, but doing quite poorly due to my illness, when this happened.)
This is rather autobiographical, but it also links into the main topic of the thread. My belief that my symptoms were mental, my lack of awareness of ME/CFS, and my doctors' lack of awareness of ME/CFS caused me severe emotional stress and made me waste three years of my life. I want to see increased awareness of ME/CFS, and for it to be treated as a biological disorder, so nobody ever goes through the same thing as me.

I had an almost identical experience, and it was the most demoralising year of my life.

Me too. Struggled on in the job for about 18 months, with lots of paid then unpaid sick leave, but had to quit. Then tried more full time, then part time, study for 2-3 years, which was a little bit easier for a while because I had more control over my schedule. But clearly that was not sustainable either, and I was still operating very much sub-par.

At that point I just floated for a few months wondering what the feck was going to happen to me now, before finally getting a diagnosis.

Me too. I actually worked my entire career with ME brain fog, but the severity fluctuated and what you've written is a good description of the times when my function dropped right off.

When I also developed B12 deficiency, which added memory loss so bad I sometimes couldn't remember how to spell simple words, I realised I was working absurdly long hours in order to keep up and still spending most of the time either putting right my own mistakes or setting up systems to make sure I didn't forget important things. When I had to ring someone on a pretext because I'd forgotten how to find out what date it was (using a phone that displayed the date on the lock screen), I knew I couldn't carry on.

Same experience too. My cognitive and sensory problems keep getting worse over the years as well. They are now so profound I can't ignore if there is something wrong with my brain. I went to see a brain specialist neurologist/neuroscientist who confirmed neurological symptoms and recommended neuropsychological evaluation, which is used to detect non-visable damage.

 

[livinglighter]

I recall reading some years ago that Michael Sharpe stated that "ME should not have been mixed-in with CFS".?

The more I hear about all this, the more confused I get.

 

[Peter T]

The more I hear about all this, the more confused I get.

I suppose the only question is, is this ongoing confusion woolly thinking or deliberate obfuscation?

Unfortunately given this has been happening over a number of years blaming an absent minded mistake is no longer a reasonable option, either Sharpe does not feel it matters enough to seek to any meaningful clarification, which would suggest contempt for the patients he is claiming to help, or he is deliberately using ambiguity, saying different things to different people, as a strategy to undermine critics. Either way it does not inspire confidence in his academic credibility.

 

[Kitty]

is this ongoing confusion woolly thinking or deliberate obfuscation?

I think it's a carefully placed get-out clause. He knows that at some point, the pathology that causes or perpetuates ME is likely to be unpicked or a reliable biomarker found, and it could come whilst he still has some public profile.

"Yes, but I wasn't talking about those patients. They have ME, whereas I was treating CFS."


ETA: Sorry, pressed Post too soon. It doesn't matter that there is no difference between ME and CFS—what matters is that there are two names in use, that he can utilise to create an artificial separation.

 

[rvallee]

He has wittered on and off about this down the years, as have others, saying that PACE was about CFS not ME, but when you look at the trial manuals they mostly refer to CFS/ME.

Yup. The published protocol is titled: "Protocol for the PACE trial: A randomised controlled trial of adaptive pacing, cognitive behaviour therapy, and graded exercise as supplements to standardised specialist medical care versus standardised specialist medical care alone for patients with the chronic fatigue syndrome/myalgic encephalomyelitis or encephalopathy".

Not ambiguous at all. Which makes him pretending otherwise especially creepy. When lies are rewarded, you get a lot of lies, people feel comfortable saying whatever benefits them. That's why truth should be absolute in medicine. It's absurd that it isn't, that it doesn't even matter, there are no consequences to lying, only for not complying.

 

[rvallee]

Your story is markedly similar to what happened to me. When I first got ME, I had no idea what happened. I was in college at the time, and the biggest change was that my mental health plummeted because I could no longer handle the mental load. I also had major trouble concentrating. I had physical PEM too, but I never connected it to my neurocognitive symptoms until I learned about ME, 3 years after becoming ill.
Vaguely thinking something was wrong, but being clueless how severe or permanent was for three years was a very bizarre experience. I knew I wasn't the same person as before, but didn't know to express it. The most striking example of this was late one night in July or August of 2020. I was testing electronics to sell on eBay and needed a video tape. I rummaged around for one and popped it in the VCR/DVD combo I was testing. The content on the tape was rather mundane--a random recording of the local news from 2011--but for some reason, it made so many memories come flooding back. I nearly broke down crying at the thought that I was so much more functioning back then, and in previous years, but I had no idea why. (For context, I was 15 in 2012. I was between my 3rd and 4th years college and 21 when I got sick in 2018, and I was 23 and working as an eBay seller, but doing quite poorly due to my illness, when this happened.)
This is rather autobiographical, but it also links into the main topic of the thread. My belief that my symptoms were mental, my lack of awareness of ME/CFS, and my doctors' lack of awareness of ME/CFS caused me severe emotional stress and made me waste three years of my life. I want to see increased awareness of ME/CFS, and for it to be treated as a biological disorder, so nobody ever goes through the same thing as me.

My early notes also mostly emphasize psychological issues. It was so hard to pinpoint what was happening to me. Over time the physical symptoms became much more obvious but for me it was mostly dizziness/lightheadedness, brain fog, headaches, feeling concussed.

I see the same on LC forums, too. It really depends on the symptoms people, but most are fully open to it being partly or main psychological. Not because it makes sense, I think mostly because for most people it's a lot easier to deal with. And, really, it would be a lot easier if this were all psychological. Although, frankly it means this wouldn't even exist at all but whatever.

Makes all the lies about us rejecting psychological issues so malicious. Just straight bullying, even. Like stealing from the poor then blaming their inability to get out of poverty as evidence that's all they deserve, that they're just naturally poor because they think like poor people.