Simon Wessely Didn't Want His e-Mail On A Blog - Here It Is on Hole Ousia

Welcome Peter Gordon.

Transparency seems to be an issue in many areas. Regarding anti-depressants - I was offered them “because they help with ME symptoms” even though I clearly was not depressed. Luckily for me others warned me of the withdrawal issues, so I handed the script back.
 
TiredSam said:
Welcome Peter Gordon, I have just processed your membership and you can post here now if you like.
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Excellent.
Peter Gordon said:
I am of the view that transparency matters in science and in our approach to healthcare overall. Transparency about Medical Guidelines is most important, and a powerful individual, or indeed any powerful organisation should not strive to hide matters important to public health.
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I love that statement Peter Gordon :). Because without transparency there can be no trust, and trust is what holds it all together, or should do.
 
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strategist said:
:D

Speculation about what really drives them is strangely fascinating. It reminded me that this group wanted to make medicine less biological and more psychosocial, but maybe that's just ideology at the service of financial interests.

They assumed all this "knowledge" about psychogenic disorders, somatization, secondary gains, illness beliefs determining disability, etc was true and then tried to come up with ways to use it treat people. First was ME, then MUS. It turns out that it doesn't work well, if at all. That they use methodology likely to yield false positives is a problem but this all started with their belief that it was somehow psychosomatic (Wessely's paper in 1989). If we applied high standards of evidence to the body of knowledge about "psychosomatic" conditions, how much would be left? Probably not much.
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nothing to do with personal stupidity and everything to do with incomes from insurance industry . always follow the money when looking for motivation.
 
I hope I didn't offend you, @Peter J Gordon. I was genuinely trying to get my head around the issues.

In my quest, I also read a good selection of the patient testimonies to the Scottish parliament on that page, and was very interested and concerned about the issues. The testimonies discussing benzo's seemed particularly strong and consistent.

I was struck by the wider ethical problem - that it is hard for the patients to get heard, because their testimony is often devalued by virtue of their psyc diagnosis.

You got me interested.
 
I’m concerned that anitryptiline is the standard medication supposedly to help people with ME with pain and sleep issues the only reason it helps a bit with sleep is it makes you so drowsy and zonked and it has a bad hangover effect. Is there any actual evidence for its use in people with ME if not how come it is widely used.
 
Ami does nothing for pain, apart from make you shut up about it, if the dose is high enough, you still experience it. I also believe it is more expensive than, say, oramorph, if painkilling is your aim (fairly sure last time I checked it was anyway). Timed correctly, which I will admit is a bit of a knack, oramorph can also help with some types of sleep issues.

Ami is of course used in preference because of the anti opioid hysteria we are currently going through, despite it being less effective, being far slower to act and thus less controllable, and having worse side effects. and of course being on a par addictive wise, for most people.

Neither is that great for ME, ami removes control and "feel", and all opiates used long term can damage one type of pain nerve junction (there are several types but damage to any of them can lead to neuropathic pain which non specific pain killers struggle with)
 
I am on long-term low-dose Amitriptyline for lower back pain (always had a slightly dodgy lower back, no saggy mattresses or chairs for me).

Works well for that for me, and doesn't seem to interfere with other functions. Best taken an hour or two before bedtime.

YMMV
 
Esther12 said:
Hate to be the bearer of bad news, but there's growing evidence linking amitriptyline to an increased risk of dementia: https://www.bmj.com/content/361/bmj.k1315

Might still be worth it for some, and I expect that consistently poor sleep is not going to be great for one's dementia risk (possible eg: https://medicine.wustl.edu/news/lac...54.1921086529.1515001557-875107824.1515001557), but probably worth being aware of the risk.
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Although this study is hard to interpret because people prescribed anticholinergic drugs over a long period of time are not a random selection of the population. These drugs are prescribed for a much wider set of complaints than SSRIs. And it could be some of those complaints might make this group of individuals more vulnerable to dementia, on average.
 
Esther12 said:
Hate to be the bearer of bad news, but there's growing evidence linking amitriptyline to an increased risk of dementia: https://www.bmj.com/content/361/bmj.k1315
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Do let me know if I start showing signs. :bucktooth:

But seriously, thanks for the link.

Might still be worth it for some, and I expect that consistently poor sleep is not going to be great for one's dementia risk (possible eg: https://medicine.wustl.edu/news/lac...54.1921086529.1515001557-875107824.1515001557), but probably worth being aware of the risk.
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I am also on long term Omeprazole, which apparently slightly increases the risk of gastro tract cancers. Basically I am trading off the probability of losing a couple of years versus the certainty of not having chronic serious reflux for the intervening 25 years. That level of reflux is very unpleasant and distressing, even crippling at times, and carries it's own risk of esophogeal cancers, etc.

Add in that ME/CFS seems to reduce lifespan by a few years on its own, and overall I reckon I come out significantly ahead on that risk.
 
Keela Too said:
Welcome Peter Gordon.

Transparency seems to be an issue in many areas. Regarding anti-depressants - I was offered them “because they help with ME symptoms” even though I clearly was not depressed. Luckily for me others warned me of the withdrawal issues, so I handed the script back.
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Many thanks Keela, it is a pleasure to join you all. I hope you can all bear with me as my knowledge and understanding of issues can never be sufficient. I am of the view that lived experience is the most vital sort of evidence.

aye Peter
 
Woolie said:
I hope I didn't offend you, @Peter J Gordon. I was genuinely trying to get my head around the issues.

In my quest, I also read a good selection of the patient testimonies to the Scottish parliament on that page, and was very interested and concerned about the issues. The testimonies discussing benzo's seemed particularly strong and consistent.

I was struck by the wider ethical problem - that it is hard for the patients to get heard, because their testimony is often devalued by virtue of their psyc diagnosis.

You got me interested.
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Dearest Woolie,
Please do not worry, you did not offend me at all. Your comments were just you seeking an understanding and that is a good thing!

It was just that I reckoned folk would be a little puzzled why I had chosen to make this correspondence with Sir Simon Wessely public. This was not an easy decision for me but in balance came down to a consideration of the ethics of wider harm and benefits.

aye Peter
 
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[This was my attempt at a short background summary before I became a registered member. Thank you all for making such astute and helpful comments, and letting me join you, I am always learning, aye Peter]:

"I thought that it might be helpful to explain a little more backdrop.

The first thing I would like to confirm is that I do not have any “beef” with Prof Sir Simon Wessely. I simply do not share his views and approach to transparency. My interest has long been in over-medicalisation and the potential for any intervention (not just medications) to cause harm as well as benefits.

I have petitioned the Scottish Government for A Sunshine Act for Scotland. At the time Prof Sir Simon Wessely was President of the Royal College of Psychiatrists and we communicated about the College approach to transparency, which I felt was failing. I should say that I have never met Sir Simon Wessely though I did see him arrive at the International Congress in Edinburgh 2017 where I was peacefully protesting (re Sunshine Act).

‘Snow leopard” states: “Peter Gordon then posting the private email exchange is also strange and it is likely there was some sort of prior provocation between them before this current exchange”. This speculation is not correct. I shared this communication because I am of the view that transparency matters in science and in our approach to healthcare overall. Transparency about Medical Guidelines is most important, and a powerful individual, or indeed any powerful organisation should not strive to hide matters important to public health.

‘Woolie’ is correct: “I just read Peter Gordon’s letter to the Scottish Parliament here, and it gives some background to Gordon’s concerns. They are largely about the overprescription of antidepressants and other psychoactive drugs in psychiatry and general medicine.”

‘Woolie’ states: “So his beef with Wessely is confusing, because Wessely does not seem heavily in bed with pharma”. It is correct that Sir Simon Wessely has not been significantly involved with Pharma, however, in my opinion, in his position of power (as President of my College) he could have helped ensure far greater transparency than we have today. Sir Simon Wessely has shown various views on the place and role of big business in psychiatry and medicine generally

‘Emsho’ is absolutely correct that my concerns about this matter have a link with antidepressant dependence and withdrawal effects which can be severe and protracted.
‘Emsho’ continues “I’ve been told that patients’ concerns are frequently dismissed and they are being diagnosed with somatic/functional disorders or Medically Unexplained Syndrome (MUS). The PACE trial (certainly in Scotland) is being used as evidence for MUS, and for their symptoms being ignored.” This is indeed my concern and that of many others.

Both Sir Simon Wessely and his wife Prof Clare Gerada have consistently argued that dependence and withdrawal from antidepressants are generally minor and very short lived. This outlook is at odds with the prescribed harm community.

I hope this wee summary is helpful.
aye Peter
 
In terms of openness I share with you that one of my siblings lives with ME and that I have experienced dependence and severe withdrawal with an SSRI antidepressant. I was started on this antidepressant for social anxiety but in its withdrawal had a very severe depression.

Peter
 
Thank you...unfortunately our struggles with Sir Simon, or, to be more specific, the results of the policies informed by his published research, have helped lead to a volume of human suffering so unnecessary it defies description. After a point one does start to question how it doesn't morph into having a personal beef with the man himself.
 
@Hole Ousia I apoligise for my speculation that you had prior beef with SW.

I am curious as to which evidence you are referring to on long term harms of antidepressant usage. Specifically, evidence based on prospective studies. I know there is evidence of medium term reduction in 5-HT sensitivity/expression after cessation of SSRIs that at least partially explains the discontinuation syndrome.

Do you believe that medical professionals need to be better educated about antidepressant discontinuation syndrome?

Also, an aside, a notable fact that many medical practitioners don't know is several SSRIs have been tested for efficacy for CFS patients and all have been found to lack efficacy not only for the CFS symptoms, but also for depressive symptoms in this cohort. So prescribing SSRIs for this patient group is not "evidence-based".
 
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Sean said:
Do let me know if I start showing signs. :bucktooth:

But seriously, thanks for the link.


I am also on long term Omeprazole, which apparently slightly increases the risk of gastro tract cancers. Basically I am trading off the probability of losing a couple of years versus the certainty of not having chronic serious reflux for the intervening 25 years. That level of reflux is very unpleasant and distressing, even crippling at times, and carries it's own risk of esophogeal cancers, etc.

Add in that ME/CFS seems to reduce lifespan by a few years on its own, and overall I reckon I come out significantly ahead on that risk.
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take a look at @mariovitali 's thread on liver. Reflux can be due to too little stomach acid rather than too much.
 
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