Simon Wessely's Big Shift? CBT Icon Calls For Big Rituximab Trial

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Yes - he dI'd the same theme with GWS. As medical technology grows tho it will be harder and harder to muster such arguments
Cort, I have a doctor friend in England sick with our illness. He was he one who turned me onto researching Wessely and I found years of documents where he was PAID by UNUM to go against us, go against doctors who felt bad for us and tried to help us, he went to all odds to discredit us. HE IS PAID BY INSURANCE COMPANIES TO DO THIS DISGUSTING BEHAVIOR. He need to find the next illness... MCS Multiple Chemical Sensitivity is at risk... anything that causes disability and has no tangible proof is where he will go..
 
Grrr. I've been out of the loop with what's been going on in the UK and had never heard of Simon Wessely. Just looked at the collected quotes. I shuddered when I read this: ' [In our graded exercise programme, there were] a very large number of drop? outs from treatment, largely related to the fear these patients had, albeit inappropriately, of accepting that their disorder was all in the mind.'
Reminds me of about 12 years ago when a psychiatrist was in charge of our local rehab unit, which also was the gatekeeper for who should get home support. He believed CFS was 'all in the mind'. No one with CFS in this town could get home help unless they had first been admitted to the rehab unit for 'assessment', during which they were sent to the physio gym and made to exercise. Not surprisingly, very few submitted to this.

Wessely's about turn certainly is puzzling. If he really has changed his thinking he owes us all a big apology.
 

tatt

Well-Known Member
Wessely is a doctor and hence claims to be a scientist and in the UK that means you are supposed to practise evidence based medicine. There is increasing scientific evidence of a physical basis for ME. Therefore he has to shift his stance a bit to retain any credibility with colleagues. He'd probably be a lot happier if the rituximab trial failed.

My local "ME service" wont provide any help unless you first have CBT and GET. If you aren't well enough for this you get no help whatsoever. Wessely is responsible for a great deal of damage to a lot of people and for the lack of funding for ME research in this country.

It is a positive move that he has said there is a strong case for a trial since he still has too much influence but he hasn't at any point accepted that there is a physical base for the illness and admitted that he got it wrong. His comments are still cntitent with his belief that it's all in the mind. It's positive because it shows that the scientfic evidence s becoming overwhelming :)

As the evidence for a physical basis builds further expect to see more shifting of position and claims that he was providing the only treatment that helped when his colleagues would not accept people were really ill. Psychiatrists here claim that their role is to work in the area of uncertainty. With increasing ability to study the brain and develop proper treatements for the biochemical issues underlying what are called "mental health " issues psychiatry is going to undergo a revolution in the next 50 years.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Wessely is a doctor and hence claims to be a scientist and in the UK that means you are supposed to practise evidence based medicine. There is increasing scientific evidence of a physical basis for ME. Therefore he has to shift his stance a bit to retain any credibility with colleagues. He'd probably be a lot happier if the rituximab trial failed.

My local "ME service" wont provide any help unless you first have CBT and GET. If you aren't well enough for this you get no help whatsoever. Wessely is responsible for a great deal of damage to a lot of people and for the lack of funding for ME research in this country.

It is a positive move that he has said there is a strong case for a trial since he still has too much influence but he hasn't at any point accepted that there is a physical base for the illness and admitted that he got it wrong. His comments are still cntitent with his belief that it's all in the mind. It's positive because it shows that the scientfic evidence s becoming overwhelming :)

As the evidence for a physical basis builds further expect to see more shifting of position and claims that he was providing the only treatment that helped when his colleagues would not accept people were really ill. Psychiatrists here claim that their role is to work in the area of uncertainty. With increasing ability to study the brain and develop proper treatements for the biochemical issues underlying what are called "mental health " issues psychiatry is going to undergo a revolution in the next 50 years.
Well said Tatt!
 

Sarah L

New Member
Well said Tatt!
I do not think he has changed his views at all. Someone asked him for a quote, so he gave one. When Margaret Williams did the long-running collection and publication of Wessely quotes about this disease, once in a while there would be one quote vague enough to allow a person to infer that Wessely did see physiological changes in M.E. patients. Well, he never did see that, his credo is that this disease is all in the mind, created by some mysterious process by the patient. Wessely never cured or improved anyone. He was part of the PACE/FINE trials, which are technically incompetent. Somehow, he has aura of authority, feeding insurance companies what they want to hear -- do not pay those folks for disability, they are not disabled, just faking it! And to influence such a huge part of the US and UK medical establishments. He had the temerity to call police to protect him from ill patients, oh poor Simon. Over 20 years I have read this man's implausible research, and seen articles published that are so flawed (kindest word I can think of) and often baseless, that he can be operating only on power of reputation, and the medical version of the good ole boys network. I used to work in transportation research, mere engineers, and none of his papers would have been published, caught by first level reviewers for the frauds they all are. If I ever have to eat these words while I am alive, fine.

I expect him never to change his views, or more importantly his actions. His talk in interviews may sound different, but what he says to his allies will never change. I appreciate your selected collection of quotes from him, Cort. Yours is way shorter than the running tab that Margaret Williams kept organized by year, and released periodically. Wessely is infuriating, the opposite of a good doctor, and I am sure, a big part of why I can be sick for nearly 26 yeas and fully disabled from work for 20 years, with help from just one doctor (relief of some symptoms) in that time, and the average doctor that I meet more scornful of my main diagnosis here in the US and the UK's national health system still putting patients in mental hospitals when they are at their sickest, making their lives pure torture. Ask a guy with a huge ego to comment on something in the news, he will comment. Does it matter what he says? Not at all, if Simon Wessely is the one who was asked. Well, that is the end of my rant.

I am pleased more people have learned Wessely's long history of scorn for sick and disabled people, the depth of his scorn and the firmness in his own notions, and I will add, his succes in blocking any retraction of his big study, the falsified and altered PACE trials.

Sarah
 

Lartista

Member
Yes - he dI'd the same theme with GWS. As medical technology grows tho it will be harder and harder to muster such arguments
Cort, I was in the insurance industry as well as a stockbroker for 25 years so I also have a perspective as a ex-selling agent. Wessely's time is running out of making money from ME/CFS. It is clear that many new findings are coming out stating that ME/CFS is a serious, medically, psychically based illness and not a mental illness as he has claimed. So his ship of making money staying on the insurance companies' side is going down fast. So he is bailing ship right before it sinks. He believes that by doing so, he is surviving and saving his reputation. he can't right the ship down or he will lose all creditably in the medical industry.

If he declares that he is starting to SWITCH that maybe ME/CFS is a valid read medical condition and not mental illness, he can say he joined in, in helping us. He doesn't make money here. He has made his money.

WHAT HE IS DOING IS TRYING TO SAVE HIS REPUTATION TO SWITCH TO ATTACK THE NEXT VULNERABLE ILLNESS. THE INSURNACE COMPANIES WILL TELL HIM WHICH TO START ATTACKING AND WESSELY WILL REDIRECT AND BECOME AN AMBULANCE CHASER FOR THE NEXT INVISIBLE ILLNESS IN ORDER TO MAKE MONEY THEIR. HE IS THEIR HIGHLY PAID PUPPET.

i GOT MY HANDS ON A UNUM MEDICAL REVIEW OF OVER 20 PAGES. THEY HIRE INVESTIGATORS TO DRIVE WITH A VIDEO CAMERA BEHIND PEOPLE, GET DUNN & BRADSTREET TO CALL THEM, SEND OUT FLYERS TRYING TO ENTRACT THE DISABLED TO DENY CLAIMS.

As an example look at it this way... $2000 monthly x 12 = $24,000 x 20 years = $480,000 for a 45 year old that gets sick. Unum has mental illness clauses that do not allow mental illness claims to be paid.

If Wessely can get other doctors to beleive that this is a mental illness. Then MD will not right it up without a mental illness diagnosis too and the claim does not get paid. So about half a million for one person at 45 YOA x 500 disabled = $250,000,000. That's assume they are only 45 and not 30 YOA and that there is only 500 claims and not 5000.

So it is in the insurance companies interest to pay medical consultants to deny the claim and medical verify you are nuts not sick. Personally, Unum sent me to an independent medical examiner and more than check to see what illnesses I had, the 2 inspectors, tried to find me malingering and trying to falsify the claim. When all was done, the Unum report started that I was NOT malingering one bit even though the symptoms were bizarre. He will change illnesses in the near future as he rode the ME/CFS horse dry... He gets consulting fees for every position he takes and he is only transitioning... for his next killing of fees... AN example...

MetLife Hires Orthopedic Surgeon, Who It Had Previously Paid Over $250,000 to Conduct Over 418 Disability Reviews, to Conduct “Independent Medical Review” and Find That There Are No Functional Limitations

Discouraged, but thinking that perhaps new reports from his treating physicians would convince MetLife that he was indeed disabled, Mr. Rowles decided to submit a final appeal for disability benefits. The reports from Mr. Rowles’ treating physicians provided noteworthy evidence of the difficulties he was having dressing himself, getting on and off the toilet, and that his physical pain had lead to psychological distress with emotional and cognitive symptoms.

Instead of overturning its decision to deny benefits, MetLife hired Dr. Howard P. Taylor, an orthopedic surgeon, who had spent prior years working for The Paul Revere Life Insurance Company and Unum Life Insurance Company of American as an in-house medical consultant evaluating disability claims, to perform an “independent medical review” of Mr. Rowles’ disability claim.

It was also discovered that Dr. Taylor had been paid over $250,000 by MetLife over a three year period to conduct 418 “independent medical reviews.” Unfortunately for Mr. Rowles his fate was sealed as soon as MetLife decided to hire Dr. Taylor. Without ever physically examining Mr. Rowles, and only reviewing the medical records, Dr. Taylor determined that, since Mr. Rowles attempted to return to work for 4.5 days, he would not be considered to have functional limitations that would include any reduction in his ability to work full time.

Based on Dr. Taylor’s findings, MetLife advised Mr. Rowles that it was upholding its prior decision and that he had exhausted all of his administrative remedies.http://www.disabilityapplicationservices.com/metlife-long-term-disability-denial-relies-on-a-hired-gun-ime-doctor-but-court-reverses/
 
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Cort

Founder of Health Rising and Phoenix Rising
Staff member
Thanks
Cort, I was in the insurance industry as well as a stockbroker for 25 years so I also have a perspective as a ex-selling agent. Wessely's time is running out of making money from ME/CFS. It is clear that many new findings are coming out stating that ME/CFS is a serious, medically, psychically based illness and not a mental illness as he has claimed. So his ship of making money staying on the insurance companies' side is going down fast. So he is bailing ship right before it sinks. He believes that by doing so, he is surviving and saving his reputation. he can't right the ship down or he will lose all creditably in the medical industry.

If he declares that he is starting to SWITCH that maybe ME/CFS is a valid read medical condition and not mental illness, he can say he joined in, in helping us. He doesn't make money here. He has made his money.

WHAT HE IS DOING IS TRYING TO SAVE HIS REPUTATION TO SWITCH TO ATTACK THE NEXT VULNERABLE ILLNESS. THE INSURNACE COMPANIES WILL TELL HIM WHICH TO START ATTACKING AND WESSELY WILL REDIRECT AND BECOME AN AMBULANCE CHASER FOR THE NEXT INVISIBLE ILLNESS IN ORDER TO MAKE MONEY THEIR. HE IS THEIR HIGHLY PAID PUPPET.

i GOT MY HANDS ON A UNUM MEDICAL REVIEW OF OVER 20 PAGES. THEY HIRE INVESTIGATORS TO DRIVE WITH A VIDEO CAMERA BEHIND PEOPLE, GET DUNN & BRADSTREET TO CALL THEM, SEND OUT FLYERS TRYING TO ENTRACT THE DISABLED TO DENY CLAIMS.

As an example look at it this way... $2000 monthly x 12 = $24,000 x 20 years = $480,000 for a 45 year old that gets sick. Unum has mental illness clauses that do not allow mental illness claims to be paid.

If Wessely can get other doctors to beleive that this is a mental illness. Then MD will not right it up without a mental illness diagnosis too and the claim does not get paid. So about half a million for one person at 45 YOA x 500 disabled = $250,000,000. That's assume they are only 45 and not 30 YOA and that there is only 500 claims and not 5000.

So it is in the insurance companies interest to pay medical consultants to deny the claim and medical verify you are nuts not sick. Personally, Unum sent me to an independent medical examiner and more than check to see what illnesses I had, the 2 inspectors, tried to find me malingering and trying to falsify the claim. When all was done, the Unum report started that I was NOT malingering one bit even though the symptoms were bizarre. He will change illnesses in the near future as he rode the ME/CFS horse dry... He gets consulting fees for every position he takes and he is only transitioning... for his next killing of fees... AN example...

MetLife Hires Orthopedic Surgeon, Who It Had Previously Paid Over $250,000 to Conduct Over 418 Disability Reviews, to Conduct “Independent Medical Review” and Find That There Are No Functional Limitations

Discouraged, but thinking that perhaps new reports from his treating physicians would convince MetLife that he was indeed disabled, Mr. Rowles decided to submit a final appeal for disability benefits. The reports from Mr. Rowles’ treating physicians provided noteworthy evidence of the difficulties he was having dressing himself, getting on and off the toilet, and that his physical pain had lead to psychological distress with emotional and cognitive symptoms.

Instead of overturning its decision to deny benefits, MetLife hired Dr. Howard P. Taylor, an orthopedic surgeon, who had spent prior years working for The Paul Revere Life Insurance Company and Unum Life Insurance Company of American as an in-house medical consultant evaluating disability claims, to perform an “independent medical review” of Mr. Rowles’ disability claim.

It was also discovered that Dr. Taylor had been paid over $250,000 by MetLife over a three year period to conduct 418 “independent medical reviews.” Unfortunately for Mr. Rowles his fate was sealed as soon as MetLife decided to hire Dr. Taylor. Without ever physically examining Mr. Rowles, and only reviewing the medical records, Dr. Taylor determined that, since Mr. Rowles attempted to return to work for 4.5 days, he would not be considered to have functional limitations that would include any reduction in his ability to work full time.

Based on Dr. Taylor’s findings, MetLife advised Mr. Rowles that it was upholding its prior decision and that he had exhausted all of his administrative remedies.http://www.disabilityapplicationservices.com/metlife-long-term-disability-denial-relies-on-a-hired-gun-ime-doctor-but-court-reverses/
Thanks Lartista for that vivid protrayal of the insurance business...It's an ugly business isn't it? I know people rip off the insurance companies and I can well understand them going after them but people with real illnesses - particularly those with controversial illnesses that are susceptible to misinterpretation - seem to get caught in the middle all too often. Even worse some insurance companies specifically target people with FM and ME/CFS...

It's unfortunate Wessely went that route - testifying for the insurance companies - I'm sure that he's made his money by now and he's even been knighted..I think he does see a different future than he suspected roaring down on him...which is good news for us :)
 
Good to see he's not engaging in anti science CFS denial anymore! If he has any integrity he'll come out and admit his former position was morally bankrupt and intellectually dishonest. So should self professed skeptic "America's Dr", Dr Dean Edell.
 

mjbtd8

New Member
Hi everyone
I have just posted 2 experiences of using LDN for CFS/ME on PlosOne following the publication of a phase 2 clinical trial of rituximab in CFS/ME. Although rituximab has shown the most impressive results to date, other drugs also need trialling. If you have responded well e.g. to LDN, ampligen, or one of the other protocols being developed - could you post as well? We need the media and governments to realise that funding for clinical trials is crucial.
Here is my link

http://www.plosone.org/annotation/listThread.action?root=86619
Thanks
Monica Bolton
 
Well,

he has recieved death threats I remember reading last year or year before, can't quite remember exactly , so maybe he is a little scared...? that could be another reason for his clever changing of sides, if after all, enough robust evidence does point to him being totally wrong, the media here loves to knock someone down when they are flying high and if he was targeted by the media, it would look like if there was one person to blame for causing countless misery and in some cases death, he would be it. So maybe he can see the way things could go and he is perhaps a little worried? Maybe he should apply some CBT to that then....?

Tim
 

Luke

Member
Simon Wesley was and is still wrong and made a lot of people’s lives very difficult with his dogmatic views. I have extreme sensitivity to light, severe chronic muscle pain, and severe fatigue, to name a few of my symptoms, and find the above comments Simon Wesley has said over the years not only insulting but inhumane as it has set the science back many years and caused us to not only suffer the symptoms of this real biological disease but to do so without support.... many of which have gone to their death bed with the disease... a life ruined... and no validation or help for their tremendous suffering.

However, there is a story of a famous scientist (I'll try to get the name of him) who when someone in the audience confronted him and said "see you changed your mind" he replied "what do you do when you're wrong". So if Simon is going to humble himself and apologize and now actively work on finding the real cause of this disease and real treatments that work - NOW, BEFORE science cracks this and it is obvious he was wrong - then...... he should be forgiven and perhaps even praised.

I doubt he will. But would forgive him genuinely and even praise him if he genuinely and only if he genuinely did get behind it now and solve it. The flip side is eventually science will get to the bottom of it, and Simon Wesley will be a case study in textbooks for how incorrect hypothesis and dogma (especially in psychiatry) can cause immense suffering and stagnation in medicine. To the man with a hammer every problem is a nail.

But if Simon just cowardly tries to get on the right side of history then i'm sure he will have a lot of answering to do. And at least his legacy -- dogma not science -- will be there for generations to see.

Read this.... a VERY interesting article on doing good science that is like it is written for Wesley: http://blogs.scientificamerican.com/doing-good-science/the-ethics-of-admitting-you-messed-up/

Wesley is kidding himself and a real slime bag if he thinks he can suddenly jump ship without some serious apologies for the suffering his pseudoscience has caused.

I don't have all the details but i once heard a story that In the late 1800s there was whole populations of people in a certain area in America who were known as "malingerers" by their neighboring towns. And a doctor hypothesized that they were infected with some kind of parasitic worm. He developed a drug to kill the worm but was laughed at for years in the medical community when he tried to get funding. Eventually he did (John D Rockerfeller funded it through his grants) and it was proven they were very ill due to infection, and they recovered with the medicine.

Good, non-dogmatic, humble,scientists like Montoya and everyone listed on this page (to name a few): http://www.openmedicinefoundation.org/scientific-advisory-board/ are similar to the doctor in the story above who knew these people were sick for a reason (it was rational that all these people were not just imagining their illness). In the story above, Wesley is like the doctors who scoffed at the true cause of these peoples illness and dismissed it for how bad it actually was.

Wesley can either apologize for the suffering his legacy has caused and get behind the evidence and support real treatments.... or he can dig in and let his ego get in the way of real science and perpetuate the suffering further. I fear Wesley will not do the right thing...it would take a truly humble individual and true scientist to do so.... i think he will try to get in the way of progress to cover up what he has done.

But if he did do the right thing... in a very big and public way... he would be forgiven for making mends and actually helping. But only if he uses his power to help FROM NOW ON. Trying to silently jump ship will not do and if he tries to do it like that he will be called out and books will be written about it once science catches up with our disease.

And if he does not actively help the only comfort i take is that i cannot wait until he is on the wrong side of history with regards me/cfs and he becomes the poster boy in medicine about how if you are not careful in science dogma can be passed off as science... at the expense of a massive patient group and cause untold suffering. And he will be that poster child the minute there is a breakthrough.

Read this article: http://blogs.scientificamerican.com/doing-good-science/the-ethics-of-admitting-you-messed-up/

...Humans are fallible... and that includes scientists! (Wesley is a psychiatrist at that. Many people/scientists divide science into hard and soft sciences. And psychiatry unlike physics is in the soft category. And if Wesley is wrong about everything he has every said... there is going to be a big smirch on the "science" of psychiatry and many case studies about how it slowed the progress of people who were suffering a real biological illness)... and his name will appear in bold letters on all those case studies.

I hope it is not the case. I'd rather him get behind the real science and go from villain to hero. I doubt it.
 
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Luke

Member
I think he is calling for the larger trial in the hopes it will fail.
I also thought this. He's trying to create a win-win for himself. If it fails he can fall back to his old ideas. And if it doesn't and is eventually cracked... he can pretend like he supported us. It's very sheepish. And he will be called out for it at some point. I hope more so that he admits his mistakes and actually puts his clout behind solving it.... that would be honorable and he would be commended for doing so... but unless that happens and until AND especially on the day science makes a breakthrough with me/cfs... he will be ridiculed very heavily. I would not like to be in his shoes with the legacy he will own one day.
 

Judith

Member
Lots of thoughtful, interesting comments here. Anyone connected with ANY corporate industry and who is getting paid for their connection will say the most unscientific load of rubbish that likely goes against all they know to be true, but they'll do it. Is it possible that if Rituximab is proven effective, Wessely will profit from the pharmaceutical company(ies) that will produce it? Certainly pharmaceuticals are a huge corporate profit-making industry who use endorsements from someone like Wessely. Regardless, let's hope that Rituximab does prove helpful to patients with CFS/ME, or at the least, a subset of patients. And, of course, there needs to be many more clinical trials of other potentially effective drugs like LDN, etc.

This is off the beaten path, but since there are people who've commented on here who live in the U.K. I'd like to ask them if a) they've heard of Ashok Gupta's Amygdala Retraining Program and b) if they know anyone or are familiar with any documented benefits of that program. I have his entire initial DVD program purchased some years ago, but I haven't really worked at it. Gupta has claimed success with many of his patients who utilize his program regularly for at least six months.

He also claims that he wants to conduct clinical trials, but of course, there's no funding there. He had tried the "crowd-source" route not long ago, but I haven't followed up on how that went. As far as I know, there are no firm numbers on patients who recovered at least partially or fully vs the number of patients who found little to no results after following his program for the recommended time. Just curious, since Gupta claims "many" CFS/ME patients on his program have gone on to completely recover from CFS/ME, or reach at least a high level of functioning.
 
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Cort

Founder of Health Rising and Phoenix Rising
Staff member
Lots of thoughtful, interesting comments here. Anyone connected with ANY corporate industry and who is getting paid for their connection will say the most unscientific load of rubbish that likely goes against all they know to be true, but they'll do it. Is it possible that if Rituximab is proven effective, Wessely will profit from the pharmaceutical company(ies) that will produce it? Certainly pharmaceuticals are a huge corporate profit-making industry who use endorsements from someone like Wessely. Regardless, let's hope that Rituximab does prove helpful to patients with CFS/ME, or at the least, a subset of patients. And, of course, there needs to be many more clinical trials of other potentially effective drugs like LDN, etc.

This is off the beaten path, but since there are people who've commented on here who live in the U.K. I'd like to ask them if a) they've heard of Ashok Gupta's Amygdala Retraining Program and b) if they know anyone or are familiar with any documented benefits of that program. I have his entire initial DVD program purchased some years ago, but I haven't really worked at it. Gupta has claimed success with many of his patients who utilize his program regularly for at least six months.

He also claims that he wants to conduct clinical trials, but of course, there's no funding there. He had tried the "crowd-source" route not long ago, but I haven't followed up on how that went. As far as I know, there are no firm numbers on patients who recovered at least partially or fully vs the number of patients who found little to no results after following his program for the recommended time. Just curious, since Gupta claims "many" CFS/ME patients on his program have gone on to completely recover from CFS/ME, or reach at least a high level of functioning.
I have quite a few recovery stories that indicate that some people who do mind/body work that lowers their fight/flight response and increases parasympathetic nervous system functioning can do very well. Of course many more people have tried these approach with have much less positive results.

Gupta had one study which showed a high dropout rate and good progress in those who remained in the trial. As I recall the progress was good but not nearly to recovery status. For me these types of approaches are one part of a complete program.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Simon Wesley was and is still wrong and made a lot of people’s lives very difficult with his dogmatic views. I have extreme sensitivity to light, severe chronic muscle pain, and severe fatigue, to name a few of my symptoms, and find the above comments Simon Wesley has said over the years not only insulting but inhumane as it has set the science back many years and caused us to not only suffer the symptoms of this real biological disease but to do so without support.... many of which have gone to their death bed with the disease... a life ruined... and no validation or help for their tremendous suffering.

However, there is a story of a famous scientist (I'll try to get the name of him) who when someone in the audience confronted him and said "see you changed your mind" he replied "what do you do when you're wrong". So if Simon is going to humble himself and apologize and now actively work on finding the real cause of this disease and real treatments that work - NOW, BEFORE science cracks this and it is obvious he was wrong - then...... he should be forgiven and perhaps even praised.

I doubt he will. But would forgive him genuinely and even praise him if he genuinely and only if he genuinely did get behind it now and solve it. The flip side is eventually science will get to the bottom of it, and Simon Wesley will be a case study in textbooks for how incorrect hypothesis and dogma (especially in psychiatry) can cause immense suffering and stagnation in medicine. To the man with a hammer every problem is a nail.

But if Simon just cowardly tries to get on the right side of history then i'm sure he will have a lot of answering to do. And at least his legacy -- dogma not science -- will be there for generations to see.

Read this.... a VERY interesting article on doing good science that is like it is written for Wesley: http://blogs.scientificamerican.com/doing-good-science/the-ethics-of-admitting-you-messed-up/

Wesley is kidding himself and a real slime bag if he thinks he can suddenly jump ship without some serious apologies for the suffering his pseudoscience has caused.

I don't have all the details but i once heard a story that In the late 1800s there was whole populations of people in a certain area in America who were known as "malingerers" by their neighboring towns. And a doctor hypothesized that they were infected with some kind of parasitic worm. He developed a drug to kill the worm but was laughed at for years in the medical community when he tried to get funding. Eventually he did (John D Rockerfeller funded it through his grants) and it was proven they were very ill due to infection, and they recovered with the medicine.

Good, non-dogmatic, humble,scientists like Montoya and everyone listed on this page (to name a few): http://www.openmedicinefoundation.org/scientific-advisory-board/ are similar to the doctor in the story above who knew these people were sick for a reason (it was rational that all these people were not just imagining their illness). In the story above, Wesley is like the doctors who scoffed at the true cause of these peoples illness and dismissed it for how bad it actually was.

Wesley can either apologize for the suffering his legacy has caused and get behind the evidence and support real treatments.... or he can dig in and let his ego get in the way of real science and perpetuate the suffering further. I fear Wesley will not do the right thing...it would take a truly humble individual and true scientist to do so.... i think he will try to get in the way of progress to cover up what he has done.

But if he did do the right thing... in a very big and public way... he would be forgiven for making mends and actually helping. But only if he uses his power to help FROM NOW ON. Trying to silently jump ship will not do and if he tries to do it like that he will be called out and books will be written about it once science catches up with our disease.

And if he does not actively help the only comfort i take is that i cannot wait until he is on the wrong side of history with regards me/cfs and he becomes the poster boy in medicine about how if you are not careful in science dogma can be passed off as science... at the expense of a massive patient group and cause untold suffering. And he will be that poster child the minute there is a breakthrough.

Read this article: http://blogs.scientificamerican.com/doing-good-science/the-ethics-of-admitting-you-messed-up/

...Humans are fallible... and that includes scientists! (Wesley is a psychiatrist at that. Many people/scientists divide science into hard and soft sciences. And psychiatry unlike physics is in the soft category. And if Wesley is wrong about everything he has every said... there is going to be a big smirch on the "science" of psychiatry and many case studies about how it slowed the progress of people who were suffering a real biological illness)... and his name will appear in bold letters on all those case studies.

I hope it is not the case. I'd rather him get behind the real science and go from villain to hero. I doubt it.
I haven't lived in the UK and I don't have a lot of history with him - so I look at his comment and my first reaction is that whatever else this is - a honest reappraisal based on the facts or a callow attempt to get ahead of the curve - that it's is a good thing -and that he of all the people involved - has the opportunity to do something really good.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Hi everyone
I have just posted 2 experiences of using LDN for CFS/ME on PlosOne following the publication of a phase 2 clinical trial of rituximab in CFS/ME. Although rituximab has shown the most impressive results to date, other drugs also need trialling. If you have responded well e.g. to LDN, ampligen, or one of the other protocols being developed - could you post as well? We need the media and governments to realise that funding for clinical trials is crucial.
Here is my link

http://www.plosone.org/annotation/listThread.action?root=86619
Thanks
Monica Bolton
Agreed! LDN
 

Sarah1982

Member
It's a good thing. I think Merry is right to note that he was quoted and I have the feeling that the writer tagged some sentences together that weren't together before. His call for a bigger Rituximab study was clear, though, a nd given what he's stood for in the past - that is a jaw dropper.

Wessely's actually been quite good at debunking physiological findings in ME/CFS. For him to trust the Rituximab results suggests that he considers them to be quite strong - a good sign...
Brilliant, that gives me hope, thank you!
 

JennyJenny

Well-Known Member
You may be right. he does appear to be repositioning himself. I doubt he would give up on CBT/GET. he would surely try to insure that is added as an adjunct treatment - which would be futile honestly if a real treatment was found. Maybe it could be a mini adjunct treatment :)
I completely agree. And he is going to get away with all of this. No one will ever truly call him out nor will they try to fight him on CBT/GET. Personally, I think a large group of researchers and doctors including psychiatrists should write an open letter to him and all sign it and he should be investigated by the UK government. But it will never happen.
 
I don't know but maybe it is a bit naive to think that Simon Wessely is going to get the UK govenment to put forward a Rituximab trial. You seem to be giving him the benefit of the doubt Cort, which is good, but he may well want to get in on organising a Rituximab trial so that it fails, i.e usiing the widest, weakest, loosest diagnostic criteria possible, thereby getting a lot of poeple in the mix with many other types of cause of just fatigue such as depression etc. Isn't that what he did to recruit for PACE trials, then not include the high drop out rates in the figures?
I am just saying, if he was in charge of a new Riituximab trial in the uk and he was personally interviewing the recruits, he could (even I could it wouln't be hard) easily recruit the ones that fit more depression or hypohondriasis but fill out the forms as if they mit the criterial, and not recrutit the strong ME type ones, to try to twist the result to support his ideas.
You welcome him to use his weight in the uk government to get a large rituximab trial under way Cort. Me personally, I wouldn't want him anywhere near a new rituximab trial.
Tim
 

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