Wessely honoured with a knighthood for his work for GWS and ME

[orion]

A urine neurotransmitter panel 18 months ago showed low norepinephrine. A blood platelet catecholamine panel six months later also showed even lower norepinephrine. Norepinephrine is involved in regulating blood pressure, and blood pressure dysfunction can cause many OI symptoms.

Increasing norepinephrine directly (without also increasing dopamine and/or epinephrine) isn't really feasible currently, so trying a norepinephrine reputake inhibitore (NRI) made sense. They are all prescription drugs though. My ND from Seattle was willing to prescribe one (Strattera/atomoxetine) for me, based on those test results and the anecdotal experience of another ME patient, and it worked wonderfully, so we decided it makes sense for me to keep using it.

Neither of the norepinephrine tests were suggested or paid for by my Dutch insurance. And when a cardiologist referred me to a neurologist to look into getting Strattera prescribed here in the Netherlands, the neurologist assured me that drugs cannot help me, only GET. This was AFTER I showed him my norepinephrine lab results and described the symptoms that the drug was successfully treating. Then he printed out the entire PACE trial to, err, prove his point.

Researching the neurologist on the internet showed that he was a big proponent of "medically unexplained symptoms", with the usual view about (not) providing actual medical treatment for patients that have them. It's hard to say whether Simon Wessely's work specifically influenced his attitude, but the BPS and/or psychosomatic schools of thought certainly did. And the result was that he would entirely discount all evidence of a physiological abnormality being successfully treated by something other than an anti-depressant.

Fortunately my GP seems to believe ME is a physiological issue, not a mental health problem, so she's trying to get me a referral to a neuroendicrinologist. So far she doesn't want to prescribe it herself though, since she isn't a specialist in an area that would involve the use of an NRI. But if that doesn't work out, I can still get it prescribed by my US doctor and emailed to me - just costs a ton that way.

If your doctor doesn't want to prescribe it for OI, the primary use of Strattera is for ADHD, and it's also commonly used for anxiety. So if you and/or you doctor think you have either of those problems, that might be an alternate way to obtain it. But I definitely advocate testing neurotransmitters first, to see where the actual problem is, especially since different ME patients seem to have different problems.

Valentijn, Thanks for posting this information. It's certainly given me a lot to think about. I'll give a full reply when I've had a chance to do some background reading.

 

[Enid]

Petition here to strip (for those of us in the UK bored to death with psyche mumbo jumbo very serious psychiatric attempts to control the world of real science here) must watch out next time I make a cup of tea and try to bear with them as they so conveniently shift their postions and learning.http://www.gopetition.com/petitions/strip-prof-simon-wessely-of-knighthood.html

See The Rise and Fall of Medicine - Dr James Le Fanu as if we did not know.

 

[Wildcat]

Wildcat. I won't then commiserate with you. I have provided advice. Plenty of advice over plenty of years. I have recently 'won' an appeal for ESA and one for DLA - so maybe just maybe I do know from where you are coming (in this respect at least).

No diagnosis automatically affords the right to benefits unless terminal or unless a person is undergoing chemotherapy (and one rule on this latter has only recently been changed).

Arriving at an assessment or tribunal armed with scientific facts or medical opinion on what ME is or isn't will not help the individual IMO.

All claims are made based on the way in which a person's ability to function is affected by their disability. When my own decisions were turned down, my disability was not the issue.

It was - and remains - the degree to which my disability prevents me from doing the things that they have decided are important indicators of my ability to work - or in the case of DLA - mobility and care needs.

I have to say, Wildcat, that I am not endeared to your attitude towards me. The 'system' sucks for anyone who is sick especially. The deck is stacked against us. It is a very hard fight and it isn't enough any longer to be deserving.

Having to fight when unable to do so is wholly wrong in my view - more so when those whose existence is supposed to enable them to fight alongside or in place of those who cannot fight for themselves is being restrained by Government funding e.g. Citizens Advice.

Even if I were to lose the next assessment then I would still maintain my view. Just because I finally won my appeals does not mean I am enamoured of or defending the system. As regards the Work Capability Test there has been a concerted effort by those organisations representing 'fluctuating conditions' (meaning symptom fluctuations before you ask) that MIGHT change the way in which the assessment process is delivered.

I don't know if you have read it or followed it's development. If you haven't and want to then I'll post a link. It is now at the point I seem to remember where the DWP will be considering testing the revised questionnaire - though I will be honest here and say that I think the revised questions are too complex.

I will conclude with saying that in my experience, a tribunal is a better place to get ones case and situation across than by simply completing forms and trying to get suitable and accurate medical evidence. I found it more preferable as the court could see how much this was affecting me.

I found I could try and talk and help them to understand. But at the end of the day they are constrained by the law and by their own interpretation of it. If you want my advice - I will say this. Do not hold anything back when in front of the assessment panel or in court. Break down if you have to. Personally I find talking about what I can and cannot do very upsetting, as well as my dependence on others.

I think that where I have gone wrong in the past is to put on a brave face when I should have been far more realistic. But that's just my experience and I do genuinely wish you well. If you haven't already done so then have a word with the ME Association (if you can bear to I know that they are not everyone's 'cup of tea').

Fire.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~



Firestormm wrote: "Wildcat. I won't then commiserate with you. I have provided advice. Plenty of advice over plenty of years. I have recently 'won' an appeal for ESA and one for DLA - so maybe just maybe I do know from where you are coming (in this respect at least)."


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
.


.


Well, Firestormm,
.
If you won your DLA case, then I do hope that it was in part due to the Social Security Commissioner's Decision on MY DLA Case Hearing of 2001 (from a DLA Case that ran from 1997-2001, with 2 Tribunal Appeals and 1 SS Commissioners Appeal.)

.

Social Security Comissioner's Decisions went into SS Law - My SS Commissioners Case Decision stated that
'The phrase "CFS/ME is a fluctuating condition" is a meaningless statement and must not be used to deny DLA (at any rate) to people with ME/CFS.'
.


My original DLA Application was dismissed by the Citizens Advice on the grounds that "If it was any other illness that was making you so ill you would get DLA. But as its ME, we don't think you will win so there's no point trying" !!! !!!! !!!!!!! ..........
.


I won the DLA case, after nearly 5 years, in which all but one of the so called 'representatives' acted atrociously and unprofessionally and unlawfully - the unlawful behaviour including that of a Disability Law Solicitor that the ME Association recommended, to represent my DLA Case l!!
.

On one occasion I phoned the ME Association with an urgent Medical-Legal issue that required serious legal representaion - but the ME Association gave me the phone number of a Counsellor instead !!! !!! !!!!!! ??????.

'
.... 'Person Centred Counselling' ??? 'Psychodynamic' ????
Jungian... Freudian .... 'Solution Focussed Counselling' ...... ... CBT ?????

.
Well, in fact it was Frankie Campling (a counsellor) that the MEA gave the phone number of (not a legal advisor at all!!) ... that Counsellor had collaborated with Prof Michael Sharp (PACE Trial Researcher) on a pseudo ME advice book. ... ..
but Frankie Campling (the counsellor) was of course CLUELESS about the Medical Legal Advice that I had approached the ME Association for help with !!!!! !!!!!



.
.
For how many years have you been 'providing advice' Firestormm ??? . Three years ???

 

[Wildcat]

.
.
Firestormm wrote (about DLA and ESA) : "I will conclude with saying that in my experience, a tribunal is a better place to get ones case and situation across than by simply completing forms and trying to get suitable and accurate medical evidence. I found it more preferable as the court could see how much this was affecting me."

.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


.
So you don't think that ESA and DLA adjudicators and assessors should get it right at the first assessment , Firestormm???


.
So you think that severely sick people should have to go through months or years of the extended hell of a Disability Benefits Appeal Tribunal, and even a Higher level Appeal, to force the 'powers that be' to take their level of sickness and medical evidence seriously ..... and to properly and lawfully assess the sick/disabled person's right to legitimate sickness/diisability benefits??? ???

.
What if the person is too sick to do all the extra work necessary to get an ESA and/or DLA case to an Appeal??? ??

.

At my first DLA Tribunal Appeal I was too sick to sit upright or even speak - they had to take me out of the room so I could lie down. Afterwards the Appeal representative said that she thought the Tribunal panel were "very harsh" when assessing my case.


.


.

.

 

[barbc56]

In the states it takes on average 3-5 years to get disability and then the amount you get is repulsively low. Ninety percent of people applying for disability are turned down the first time.

Barb C.:>)

 

[Wildcat]

Interesting that the ME charities and parliamentarians have had to raise the issue of the excessive unfairness and denial of legitimate sickness/disability benefits to ME sufferers in the UK.

.

But no doubt the denialists on this forum will deny that too.

.

 

[MeSci]

The petition has been disabled by the site following a complaint by Wessely, according to the petition author.

A useful page has been created listing the comments in the petition from people who gave their surnames:

http://www.meactionuk.org.uk/Comments-on-Wessely-petition.htm

The petition author is looking for another site to host the petition.

 

[pollycbr125]

The petition has been disabled by the site following a complaint by Wessely, according to the petition author.

A useful page has been created listing the comments in the petition from people who gave their surnames:

http://www.meactionuk.org.uk/Comments-on-Wessely-petition.htm

The petition author is looking for another site to host the petition.

So instead of taking it on the chin like anyone else would have he pulls the plug . He knew the odds of any affect on his knighthood were basically null and void anyway . What a joke so anyone who has been affected directly or indirectly by Wessely and his so called work cannot even have a voice , even signing a petition that would have made no difference to recent events is denied . So much for freedom of speech and there I was thinking I was living in a democracy .I could comment further but I would probably be banned from the forum for life if I put what I really wanted to write . All I will say is what goes around comes around ill let Karma take its course .

 

[biophile]

Now for some lighthearted infotainment ...

6 Ridiculous Myths About the Middle Ages Everyone Believes:

Myth #4. Knights Were Honorable, Chivalrous Warriors

http://www.cracked.com/article_20186_6-ridiculous-myths-about-middle-ages-everyone-believes.html

 

[alex3619]

Questions: Is the biopsychosocial movement becoming the new Eugenics movement or perhaps Social Darwinism ? Is the perspective of BPS different, but the driving force in society similar?

 

[Shell]

Questions: Is the biopsychosocial movement becoming the new Eugenics movement or perhaps Social Darwinism ? Is the perspective of BPS different, but the driving force in society similar?

Answer: yes.

It's becoming more obvious in the UK every day. The Eugenics movement started here really even though some American Eugenisits were perhaps more openly vicious. But I think the apathy that sits like a London Smog on our entire country means that killing us off will simply happen.

Wessley's knighthood is a quiet message that people who undermine the hope of tests and treatment, let alone a cure, for unfashionable illnesses will be rewarded.

Poor ol' "Sir" Wessley is so childish! Fancy getting the petition shut down. What is he so afraid of?

 

[In Vitro Infidelium]

Questions: Is the biopsychosocial movement becoming the new Eugenics movement or perhaps Social Darwinism ? Is the perspective of BPS different, but the driving force in society similar?

Eugenics was a popular idea, one that was readily graspable because it was, at its simplest just the selective breeding of livestock that most people were familiar with, applied to humans. In addition to being simple it was broadcast widely by popular voices from all political complexions. How does any of that apply to an obscure psychiatric doctrine that doesn't even have universal support within its sponsoring profession ? Where are the Winston Churchills, G.B Shaws, H.G.Wells' and Linus Paulings of today publicly associating themselves with the BPS doctrine ? And what in the BPS is it , that the 'woman/man in the street' is equating to awell known 'truism in nature' ? I don't doubt the BPS could be hammered to fit into numerous contemporary political and social attitudes, but so can anything else - post modernism works like that.

IVI

 

[MeSci]

The comments page has been taken down for now as some of the comments are aggressive, threatening and potentially defamatory (although i think most of them are in fact true). I'm hoping that an abridged list of comments will be published on the same site and will let you folks know when I hear that it has been. The person who uploaded the page didn't want to risk the whole site being closed down.

I don't blame some of the 'offenders' for their comments. After all, many have had their lives ruined, having had to give up promising, lucrative careers, having relationships break down, and seen people die tragic early deaths although fighting right to the end.

But we are such helpless, neurotic, deluded people with no motivation...

 

[barbc56]

IVI, you have hurt my feelings as you just compared me with livestock. Please apologize as soon as I stop laughing.

Barb C.

 

[Marco]

Eugenics was a popular idea, one that was readily graspable because it was, at its simplest just the selective breeding of livestock that most people were familiar with, applied to humans. In addition to being simple it was broadcast widely by popular voices from all political complexions. How does any of that apply to an obscure psychiatric doctrine that doesn't even have universal support within its sponsoring profession ? Where are the Winston Churchills, G.B Shaws, H.G.Wells' and Linus Paulings of today publicly associating themselves with the BPS doctrine ? And what in the BPS is it , that the 'woman/man in the street' is equating to awell known 'truism in nature' ? I don't doubt the BPS could be hammered to fit into numerous contemporary political and social attitudes, but so can anything else - post modernism works like that.

IVI

You forgot Beveridge

Beveridge was a member of the Eugenics Society, which promoted the study of methods to 'improve' the human race by controlling reproduction. In 1909, he proposed that men who could not work should be supported by the state "but with complete and permanent loss of all citizen rights — including not only the franchise but civil freedom and fatherhood.]

http://en.wikipedia.org/wiki/William_Beveridge#Eugenics

 

[notinfinite]

Eugenics was a popular idea, one that was readily graspable because it was, at its simplest just the selective breeding of livestock that most people were familiar with, applied to humans. In addition to being simple it was broadcast widely by popular voices from all political complexions. How does any of that apply to an obscure psychiatric doctrine that doesn't even have universal support within its sponsoring profession ? Where are the Winston Churchills, G.B Shaws, H.G.Wells' and Linus Paulings of today publicly associating themselves with the BPS doctrine ? And what in the BPS is it , that the 'woman/man in the street' is equating to awell known 'truism in nature' ? I don't doubt the BPS could be hammered to fit into numerous contemporary political and social attitudes, but so can anything else - post modernism works like that.

IVI

Are you saying that eugenics is a thing of the past and its not something that we should bother about. Is this a "nothing to see here" moment? So relieved you have let me know that Eugenics WAS a popular idea, and that it can put down to post modernism, is that because there are no in-your-face pamphlets or wall posters indoctrinating us.

Psychiatry and eugenics are pretty much intertwined from the beginning to the present. Eugenics has not gone anywhere.

 

[notinfinite]

IVI, you have hurt my feelings as you just compared me with livestock. Please apologize as soon as I stop laughing.

Barb C.

Sometimes I feel like livestock - I need special documents to leave my country of residency (if I could get through my front door), my title is registered, I need ID for anything, I am subjected to cruel treatment, and IVI eats me for breakfast when I post.

Granted, I am "free range" in that I am free to roam, but I am very restricted unless I comply with man made laws. The bars/fence are definitely there.

 

[barbc56]

Psychiatry and eugenics are pretty much intertwined from the beginning to the present. Eugenics has not gone anywhere.

Can someone explain how the two are related? I guess psychiatry might have the potential to justify eugenics but it also has the potential for the opposite point of view.

I just don't see it.

Barb C.

 

[notinfinite]

Can someone explain how the two are related? I guess psychiatry might have the potential to justify eugenics but it also has the potential for the opposite point of view.

I just don't see it.

Barb C.

Sorry Barbc56, I took the bait and got distracted by the 'eugenics' word. Yes psychiatry may have the opposite point of view, even if it is/was a silent or silenced point of view. Its a huge subject that cannot take place on this thread. I want to know more about Sir whatshisname so I'm stopping with ref to eugenics.

 

[alex3619]

Eugenics was a popular idea, one that was readily graspable because it was, at its simplest just the selective breeding of livestock that most people were familiar with, applied to humans. In addition to being simple it was broadcast widely by popular voices from all political complexions. How does any of that apply to an obscure psychiatric doctrine that doesn't even have universal support within its sponsoring profession ? Where are the Winston Churchills, G.B Shaws, H.G.Wells' and Linus Paulings of today publicly associating themselves with the BPS doctrine ? And what in the BPS is it , that the 'woman/man in the street' is equating to awell known 'truism in nature' ? I don't doubt the BPS could be hammered to fit into numerous contemporary political and social attitudes, but so can anything else - post modernism works like that.

IVI

I am asking the questions, not imposing final answers. There is a big reason why I am concerned. The current UK government agenda seems with respect to DWP and ATOS seems to be ideologically driven. As for famous people, try
Sir Mansel Aylward, or even David Cameron. It is very difficult to see all the issues involved around this, and very hard to draw definitive conclusions. I suspect that will only be done from the perspective of hindsight - and possibly even mostly by historians. However we can't come to grips with it if we are not even asking the hard questions.

This ideology though is not in isolation. Those in the ME and CFS communities have seen BPS in action and where it leads in their personal lives. So we have additional reasons to be concerned. I think its premature to draw anything like definitive conclusions, but its never premature to be asking questions and wanting answers.