slander/libel/ME/Wessely

[Lily]

The anger being expressed is entirely justified and healthy, IMO. Some never acknowledge their sadness and only express it as anger. Many have never been able to express their feelings about the devastation this illness has caused because of the associated stigma.

Be it anger or sadness, expressing it in appropriate ways is therapeutic (oh dear am I sounding like a shrink? - well not all that stuff is mularky). Humor is used extensively as well, and I think it's a bit of a shame for anyone to start curtailing it, especially in fear of the likes of Wessely.

Getting stuck in anger or sadness is a whole other thing. I don't see that happening here. The productive, meaningful contributions by members here far surpass the amount of anger, (which I usually interpret as sadness) and I don't see despair, undue depression or pessimism. If you've ever been around seriously and chronically depressed people, you recognize the difference believe me. The same with anger. And yes it is healthy to blow off some steam now and then. When done appropriately, this should be a safe place to do that. If not here, where?

Members of this forum have demonstrated the abilty to blow off steam as well as direct energies in very productive ways.

 

[Min]

My own personal opinion is that he revels in the "abuse" and likes to show this to people to demonstrate how he suffers.

He also uses it in his lectures to show how 'nutty' he thinks we all are . Everything we do is turned against us by him and his cronies. I think the only way to defeat the evil they perpetrate is to fund our own biomedical research until they are proven so wrong can they no longer spread their lies.

 

[usedtobeperkytina]

Min and Kurt, you are both right.

Surely, Reeves and Wessely did not set out to cause suffering to sick people. It's simple that ego and bias, a little sexism and then some power, and the result is what we have seen. I also don't believe Reeves is as extreme in his views as many think. Maybe Wessely is. Let's remember, no matter the cause, Klimas and others recommend a very slow program of GET, starting with only one minute of mild body activity and then five minutes of rest. So GET is not bad in of itself. It just depends on just how sick you are and what type of body activity is recommended. (I don't use the word exercise because many will think of aerobics or weight lifting with that word, yet stretching is likely the more appropriate "exercise" for CFS patients.)

Min is right. While exposing errors in Wessely and Reeves is important for the record, real change will come with scientific discovery. And evidently, we have to do this ourselves. 25 years have passed since Incline outbreak and Peterson urged the CDC to investigate it as an epidemic caused by a pathogen. 25 years and government money has gone in the other direction, no matter how much patients post vicious messages on boards.

Let's get the science behind us, then we can call for government investigations.

But I do believe Reeves needed to go, if for no other reason than lack of public confidence so that anything he touched in relation to CFS was suspect, not only by patients, but advocacy groups and CFS specialists. But of course, there were other good reasons.

And the problem with some posts and statements made by patients is the tone. Portraying Wessely visually as the devil, horns included, does not further our cause or win over people. It only adds fuel to the argument that we are mentally unstable. Name calling and attributing malicious motives without evidence is not nearly as effective as presenting a well-reasoned argument on the facts. A public demonstration is not a bad idea, putting action to draw attention to the message.

 

[oerganix]

The anger being expressed is entirely justified and healthy, IMO. Some never acknowledge their sadness and only express it as anger. Many have never been able to express their feelings about the devastation this illness has caused because of the associated stigma.

Be it anger or sadness, expressing it in appropriate ways is therapeutic (oh dear am I sounding like a shrink? - well not all that stuff is mularky). Humor is used extensively as well, and I think it's a bit of a shame for anyone to start curtailing it, especially in fear of the likes of Wessely.

Getting stuck in anger or sadness is a whole other thing. I don't see that happening here. The productive, meaningful contributions by members here far surpass the amount of anger, (which I usually interpret as sadness) and I don't see despair, undue depression or pessimism. If you've ever been around seriously and chronically depressed people, you recognize the difference believe me. The same with anger. And yes it is healthy to blow off some steam now and then. When done appropriately, this should be a safe place to do that. If not here, where?

Members of this forum have demonstrated the abilty to blow off steam as well as direct energies in very productive ways.

Thank you, Lily. My sentiments exactly.

Of course we need real scientific research to prove our point that CFS/ME is organic. But enough of that has already been done to disprove the psychiatric theory, if scientific proof were are that was needed. It has been ignored, refused publication and/or lied about. It is now time to deal directly with the politics and pathology of the individuals and authorities who should have been, legally and morally, looking out for OUR best interests all along, but did not and do not.

See the research paper in the Journal of Chronic Fatigue Syndrome, posted on another thread, where researchers expose the editorial bias of the British Journal of Medicine. They say:

"We accept the principle of editorial freedom. However, there are two issues
which deserve consideration.​

1. The

BMJ claims to choose papers on best evidence. Indeed, this is what

readers expect from a medical journal. It differentiates scientific publications
from non-scientific ones. One might therefore ask whether any
mainstream medical journal should have a policy which promotes one
theory at the expense of another. Moreover, should a scientific publication
censor ​

​

all the research supporting alternative theories? And should

the editor overlook major flaws and disinformation as part of the policy?
Does this not undermine the scientific process?
2. If a journal has the ‘freedom’ to be partisan and promote one approach at
the expense of others, should it not ​

​

declare its policy so readers are

aware of it and realise that they need to seek information on the immunological
and virological aspects elsewhere? And should that journal
continue to claim to support evidence-based medicine when it selects
articles on one illness largely on the basis of personal preferences? If
one accepts that medical journals may be partisan, then there must be​

honesty and transparency. At the moment, this is not the case."

http://freespace.virgin.net/david.axford/JCFS.pdf

The major author of the paper is a clinical psychologist.

I guess they are not afraid of charges of slander, libel or defamation, so why should we be?



​

 

[IamME]

Min and Kurt, you are both right.

Let's remember, no matter the cause, Klimas and others recommend a very slow program of GET, starting with only one minute of mild body activity and then five minutes of rest. So GET is not bad in of itself.

Yeah, and she used to recommend PROZAC as her first treatment of choice.

Sorry but this just shows ignorance on her part. It's become a lazy mantra repeated by so-called experts who feel they have to reationalise and systemise everything, even a natural remission or "recovery". An illusion of control and authority for both the patient and "expert".

Apart from that five minutes is not long enough to recover from mild activity in severe ME, there is no evidence to show that most milder sufferers are doing much less than they can either. So if it's not aimed at mild or severe sufferers who is it aimed at? And the assumption that more severe = more ability to increase is a dangerous one that's all too common.

Who are all these people who can do stuff gradually and have the support to do so but never test themselves? It's an insulting, cartoon view of the real world. Most people are going to need to be admitted to an intensive, supportive hospital ward for this to even be tried. Yet all the testimony from severely affected sufferers is that they need to be allowed to naturally drift according to the disease and any small amount of "grading" causes relapses in that. It's curuous that before CFS came along there was no need for CBT/GET for any of the "recoveries" reported. And since then "rest" has become a verboeten concept.

What is the proposed mechanism ofhow this is supposed to work? Pavlovian re-conditioning? People's bodies are supposed to "forget" how to work even when they supposedly can? Are comparisons to one-off strokes or CHI really appropriate for an incurable, potentially progressive, neuroimmune disease process? "Training" is inappopriate for this disease.

Our first duty should be to the sickest and most vulnerable, anything else is immoral and unethical. Anything other than zero tolerance on GET is leaving the door open to abuse of someone, somewhere. Nowhere is there any pwME who is suffering from lack of exercise. That in itself is a differential diagnosis.

 

[Wayne]

Psychiatry a Cult

Hi All,

Just wanted to mention that I find threads like this to be helpful. I've had ME/CFS for decades, and only in the past 1-2 years have I started to become aware of what's happening in Britain with Wesseley, et al. And I've gotten this education from threads very similar to this one.

What I've learned about him and others of his ilk, is that there are elements of the psychiatry profession that have all the hallmarks of a cult. I have no idea what percentage of the psychiatry profession engages in cult-like behavior, but it seems to be that enough of them do so that the idea of ME/CFS being a psychiatric problem is widespread in our health care establishments.

It seems to me that a "psychiatric venom" regarding ME/CFS, largely instigated and perpetuated by psychiatry (professional and arm-chair variety), now seems to have affected the general population. It sure seems to me that a majority of people believe Wesseley's psychiatric orthodoxy when they "hear" that ME/CFS has "no known biological origin'.

 

[Lily]

I've been working with and around physicians and medicine for more than 40 years now. Many of you also have varied experiences in the medical field. What have you observed about how physicians feel about each other?

My experience has been that physicians in specialties other than psychiatry make fun of the psychiatrists. (Ooooo they REALLY look down on PhD level psychologists, even though they’re not physicians.) It's a standing joke among physicians that psychiatrists and the whole field is an embarrassment. They are ruthless about it.

As an aside, the other specialty that they do not consider in their league is orthopedics. They have many jokes about them - one is that orthopedists, when faced with closing elevator doors can stop the doors with their heads without risk to their career. (Just saying this is my experience not my opinion)

But who is it that refers us to psychiatrists when all the tests and labs come back within normal limits? Who codes 300.81 - somatization disorder, using ICD-9CM before they send you off for the psych eval? Who has treated you with such disrespect when you've asked for help? Did you initially seek help with a psychiatrist or an internist/family practitioner?

Let's not forget that the entire allopathic and osteopathic medical professions have let us down. Somebody threw us to the snake pit first. The shrink bogeyman didn’t come to get us. Yeah Reeves and Wessely sure did a job when the opportunity presented its self, but they couldn’t do it alone.

 

[usedtobeperkytina]

I think one of the problems is that we are thinking of an "either / or" concept. The westernized view of many illnesses is that psychiatric conditions are biological. The whole body / mind connection that is common now is the basis of this. Is there not a problem seen in brain chemicals in someone with PTSD or depression? So the biological abnormalities that have been seen in the CFS studies would not eliminate the idea that it is psychiatric, in the minds of these guys.

If a person has a bad night of sleep, not enough hours, then the endocrine system and immune system are affected adversely. A person with anxiety has physical symptoms that resembles a heart attack. If a person with anxiety can have physical manifestations, then it isn't too far fetched that the biological abnormalities in CFS are the result of stressful thoughts. It isn't either / or, scientists now know. Just as stress can affect diabetes and other heart conditions.

So the question is not either / or, but rather chicken or egg. We know stress, along with physical activity makes symptoms worse. So is it the stress that is causing it? Or is it like diabetes and stress is just a factor that makes it worse? My point is that Reeves may look at the same science, believe it is true, but see a different cause.

No science has established cause yet, so all the studies are just looking at effects. And even among the patient community are different theories of cause.

So these guys think it is bad thinking, work phobia or stress or psychiatric problem. I disagree. I also believe that this theory, especially in the minds of those in power, is dangerous. And I do believe the science points to retrovirus or CNS weakness. But until "the cause" is found, the theories will abound, including he psychiatric one.

I don't know why this is different from MS, which is now seen as neurological, even though no cause is known. Maybe it is fatigue instead of blindness and stumbling is the effect.

The answer then is more research.

Tina

 

[Wayne]

Wessley - Psychiatric Viewpoint

Let's not forget that the entire allopathic and osteopathic medical professions have let us down. Somebody threw us to the snake pit first. The shrink bogeyman didn’t come to get us. Yeah Reeves and Wessely sure did a job when the opportunity presented its self, but they couldn’t do it alone.

Good post Lily. I fully agree with your last paragraph. There's a lot of blame to go around, and the non-psychiatric health care practitioners who have embraced the psychiatric point of view are every bit as responsible as the psychiatrists.

I think it should be noted also, that many psychiatrists do NOT endorse the view of ME/CFS being psychiatric. I've seen comments on websites attesting to this. But many arm-chair psychiatrists do.

By arm-chair psychiatrists, I refer to those health care practitioners who get a visit from some pharmaceutical representative telling them they now have the ability to diagnose and prescribe for debilitating psychiatric conditions.

Apparently this never happened before the 1980s and the advent of these new (and profitable) depression medications. Doctors that previously would have been loathe to diagnose and/or treat depression all of a sudden began to feel they could make these kinds of critical decisions in a matter of minutes.

To me, the situation those with ME/CFS and other similar conditions face, is mainly EGO. And Wessely seems to personify this well as anybody else. But agreed, he can't do it alone. He needs egomaniacs following him to perpetuate his fraud.

 

[IamME]

No science has established cause yet

I think either Chia or Montoya has (I forget which is which!), at least for a subset. And if anteretrovirals work at least partly, for XMRV, that will prove it as causal as HIV is for AIDS.

so all the studies are just looking at effects. And even among the patient comunity are different theories of cause.

That's a side effect of artifical heterogeneity that's been slowly introduced since the invention of CFS, not because patients with the same thing disagree. To the original patients whose illness "started with a enteroviral-flu/encephalitic -like illness but never went away", the cause is axiomatic.

I don't know why this is different from MS, which is now seen as neurological, even though no cause is known. Maybe it is fatigue instead of blindness and stumbling is the effect.

The answer then is more research.

Tina

It largely is because of ["unexplained"] fatigue - which even in the 1940's was seen as "within the purview of psychiatry".

It's also because the biological findings in ME were little publicised, and MS had the advantage of "getting in" just before the rise of the CBT cultists and their quack "science", EBM and the modern media. Basically they had better luck, maybe better charities too. And they were better able to do direct activism.

With ME the disease was redefined to be something it wasn't, and finally, "anything else", total pathology exclusion hardwired into the definition. Once most doctors were got on side, we were finished, as who is going to listen to the "ME loonies" as one doctor blogger put it. Fatigue is the great obscurer, likely the psychs learned a trick from where they failed with hanging onto MS and wish they'd cottoned onto that sooner. Now they have an almost indestructable core of total pathology exclusion in CFS which at best, we can be rescued from/lifted out of.

There was a level playing field until CFS came along. Now what do official CFS sites, authorities say? That muscle weakness either doesn't occur or if it does it's "generalized". Well, the muscle weakness in ME is localised and intermittent, related not to deconditioning but (primarily) exertion. If you don't have episodic muscle weakness with an abnormally long recovery time, you don't have ME, period. Of course if you neglect/abuse sufferers continually enough the weakness becomes norm and then the abusers stop up their ears, turn round and blame you for letting yourself go or "deconditioning". Despite that the presentation still doesn't fit the deconditioning model.

Where I disagree with you is that research alone is going to save us. No it isn't. Dr Peterson I think it was was correct when he said we need a political solution, and the research is only part of that. We alrready have very good findings which are systematically killed off rather than followed up due to dirty politics. We have a much better definition, the Canadian, which is routinely dismissed by the "mainstream". Ganglionitis and other abnormalities are now frequently being found in deceased sufferers, but what does the psych propaganda say about it? It says that it's eithera misdiagnosis or it's due to deconditioning.

WHen faced with the prejudicially blind, you cannot make them see by simply piling on more pairs of glasses, no matter how well made they are.

 

[IamME]

Let's not forget that the entire allopathic and osteopathic medical professions have let us down. Somebody threw us to the snake pit first. The shrink bogeyman didnt come to get us. Yeah Reeves and Wessely sure did a job when the opportunity presented its self, but they couldnt do it alone.

That's the sort of thing people say when they want to give up on "western" medicine finding us an answer and want us to start waving joss sticks about and singing mantras while purging ourselves of bad karma

Yes there were stupid mistakes along the way, like Ramsay handing the research data to Beard & McEvedy even though he'd been warned he would regret it. But it was Beard and McEvedy who produced a low quality, fraudulent paper that ignored many established medical facts of the day. But the previous decade ME was actually included in a medical textbook as a neurological disease and getting a corresponding ICD classification.

You cannot understimate the influence and deceit of the "shrink bogeyman" coupled with the societal changes of the 80s that made those in power more receptive to them. It's not the first time psych has done bad and won't be the last. Of course nowadays it matters little whether they're psychs or immunologists or endocrinologists if they sing from the same psychobabble song sheet.

 

[Alesh]

"Crimes against humanity, as defined by the Rome Statute of the International Criminal Court Explanatory Memorandum, "are particularly odious offences in that they constitute a serious attack on human dignity or grave humiliation or a degradation of one or more human beings. They are not isolated or sporadic events, but are part either of a government policy (although the perpetrators need not identify themselves with this policy) or of a wide practice of atrocities tolerated or condoned by a government or a de facto authority. Murder; extermination; torture; rape and political, racial, or religious persecution and other inhumane acts reach the threshold of crimes against humanity only if they are part of a widespread or systematic practice. Isolated inhumane acts of this nature may constitute grave infringements of human rights, or depending on the circumstances, war crimes, but may fall short of falling into the category of crimes under discussion."-wikipedia

Just sayin'

I think one way would be to bring a case to the International Criminal Court against UK government or UK Ministry of Health stating your suspicion that under this Ministry something similar to a concentration camp is lead by Simon Wessely. (If there indeed is such a "hospital" for ME/CFS patients lead by him.) I know it perhaps may seem funny and I am not a lawyer but something like this should be done.

http://en.wikipedia.org/wiki/International_Criminal_Court

 

[Alesh]

Yesterday I perused about a quarter of Prof. Malcom Hooper document and my only conclusion is that if the word "humanity" has any meaning today Simon Wessely and all his adherents should spend rest of their lives in prison. I don't believe in "punishment" or "avenge" or "correction" the only significance of this would be prevention.

 

[usedtobeperkytina]

IamME, interesting points.

My statement that there is no established cause is officially, I am fully aware that XMRV has been put out as a likely cause, but it is not established. Since we are talking about last 25 years, even if it was established cause now, it would not have bearing on past treatment. My statement is in reference to why Wessely and Reeves, possibly, know the studies, recognize biological abnormalities, but have their own belief about cause.

Your comments about the vagueness of fatigue and it being a symptom of other psychiatric conditions is interesting, in relation to why CFS got different treatment than MS.

It made me think of another possible reason for our special treatment, that is the place of the big "CFS" outbreak. As reported in Osler's Web, the local health department, and then the CDC, did not consider the claims of Peterson and Cheney to be valid. Basically, they thought those doctors were overreacting, responding too much to the claims of patients instead of being objective. The people of the village were overachievers, living high stress lives. And most were women. So for them, it was 1 + 1 + 1 = psychiatric condition. And the outbreaks in other area were considered to be hysteria.

Plus, your comments about the timing of biological abnormalities making a difference between treatment of MS and CFS.

Interesting discussion.

I just know as a reporter that often people will make all kinds of claims of the evil opponents, but when I talk to the other side, I find out that there is no evil, just different opinions of what is best and what is best way to produce the best results. Mistakes and selfishness, bias, ego, political power plays, sexism, racism and other human failings have an influence, but rarely is there malicious intent.

I ask, then, since all the political efforts, by those making vicious attacks and others, such as CAA trying to coax government into different actions haven't worked thus far, then what do you propose to make this political change? We have seen Reeves is no longer over CFS for CDC. Timing would insinuate it is either just part of an overall restructure or that recent scientific discovery made the change. Do we know if the change came because of patient outcry?

Tina

 

[Lily]

That's the sort of thing people say when they want to give up on "western" medicine finding us an answer and want us to start waving joss sticks about and singing mantras while purging ourselves of bad karma

Oh, well I'm not about to give up on Western medicine and wouldn't recommend that anyone else does either. There are some things Western medicine isn't so great at though. It's definitely not the end and be all. I'm not making any of them out as evil either. And I very possibly could underestimate the influence and deceit the "shrink bogeyman", especially in the UK. In the US though, blame needs to be spread around a little more. Just MHO.