Professor Simon Wessely says he is misunderstood

[Valentijn]

You’ve just claimed it’s outrageous but now you don’t believe the care of people with physical and co-morbid mental ill health is an issue worthy of concern because it doesn’t affect enough people. How else is the inpatient care of people who have co-morbid physical illnesses whether M.E/CFS, M.S or anything else, when they are hospitalised through mental ill health, to be improved if M.E/CFS advocacy does not engage with the services delivering the care ?

You are a very intelligent person. Hence your continued misinterpretation of pretty much everyone's posts disagreeing with you regarding the place of psychiatry in ME seems deliberate. I find it very offensive.

Your stance is that psychiatric care should be an automatic part of ME treatment. It should not. It should be a part of treatment for people that need it.

Our priority as ME patients is getting appropriate care for ME - which is clearly not psychiatric.

People, ME patients or not, with psychiatric problems should get psychiatric help. This is separate from the issue of getting appropriate care for ME, except to the extent that psychiatric patients may also need to have their ME treated appropriately while under psychiatric care.

 

[user9876]

Indeed. You are saying that anecdotal evidence is not so helpful. Which is why the PACE Trial is important.

I would disagree. Trials are useful in determining the sucess of a treatment but anecdotal evidence is important in taking about safety. Anecdotal evidence basically acts as a counter example to the theory that a treatment is safe - a single example you might treat as rare and hence acceptable. However, when there are many that should lead to some serious questions about a technique. What the anecdotal evidence doesn't provide is an idea as to the percentage of patients that have adverse effects.

I posted a link to a lecture by David Healy making such arguments here
http://forums.phoenixrising.me/inde...on-failings-of-evidence-based-medicine.20711/

What I would also say is that the anecdotal evidence is based on how treatment is actually delivered rather than how it is delivered within a controlled trial environment. With a drug a trial may represent an acurate rendition of benefits and harm since the quality control is on the production line. Quality control on non pharma interventions doesn't scale as well so anecdotal evidence and treatment monitoring becomes more important. I'm pretty sure there was a paper discussed a while ago comparing CBT in the field with trial results that suggested results in clinical situations were not as good. What the MEA survey provides is evidence that they make a group of people worse.

 

[In Vitro Infidelium]

Really, IVI? All medicos, and all scientists? Really? If the system is broken something has to be done. If the professional medical organizations stand in the way of fixing it, they need to be dismantled or reorganized. Ditto for other organizations. When an organization meets its use by date and starts being dangerous to society, there are two choices in the long term. It can revamp itself and fix the issues, or it can be disbanded or forcibly reorganized. Generally this occurs by slow change, and in the process many people continue to be harmed.
The other choice is a scandal finally coming to light that initiates a formal enquiry with sweeping powers. Hmmmm, it seems one like that occurred in the UK just recently. From that enquiry will be recommendations, and from those (hopefully) changes will be made. It just takes one very public scandal. So my advice to people is (if a genuine travesty of medical treatment has occurred) scream loud, scream often, and one of those events may trigger the change needed.
Its the deafening silence from too many quarters that allows this to continue.
I don't know who you are speaking about when you say that the logic is "all M.E/CFS patient organisation should engage in a fight with psychiatry." Nobody is using that logic, except maybe you. First of all, this is not just an ME/CFS problem. Secondly, many within academia, psychiatry and medicine are already engaged trying to do something. Third, there is not a call for unity ... not by me anyway, though I have heard you say we need to be united. Unity on ME or CFS issues is a pipedream in current circumstances, either for cooperation with medical abusers or to fight it. That does not mean it should not be opposed. Nothing that has been advanced so far in this thread or any other has even begun to sway me from the view that unscientific, irrational and dangerous psychiatric practices should be opposed. Nor is it likely to given the kinds of arguments so far raised. The issue, to me, is not whether or not it should be opposed. Its how it should be opposed.

One of the groups we should be engaging with is biopsychiatry. Biopsychiatry is largely in opposition to psychopsychiatry, and has in my view a far greater chance of finding answers in the long run in comparison to psychopsychiatry (and no I am not talking about answers for CFS and ME, just in general). We don't need vague untestable hypotheses or models, we need objective testable mechanisms.

I have no idea what any of that means. It all sounds very grand but has nothing to do with M.E/CFS except maybe M.E/CFS as some kind of cypher for a subunit generation of Neos - is that what you mean by 'in general' ? In which case how does that relate to to anything I've written (which is located in wholly specific real world circumstances) ?

I didn't specify (because the previous context had alreadydefined it) but my reply to Orion was specific to the UK - we have wide spread concern about violence toward and harrassment of health care professionals, additionally and in common with other countries there is concern amongst researchers about the long standing threats to individuals and to institutions. It will not take very much to ensure that M.E/CFS advocacy is seen as egregious a source of encouragment of harrassment against both medical staff and researchers who are deemed 'acceptable targets', as is currently the ALF.

It's interesting that you don't see the need (or even disirability) for any unified approach by M.E/CFS organisations, and that you expect some/many to maintain good relations with psychiatry(and thus deflect any backlash against harrassment actions) - perhaps you consider these organisations and their members and supporters to be the useful idiots for your anti (psycho)psychiatry revolution ? Whatever it's an interesting position and I guess it leaves pragmatists like me with a clear idea of what the anti psychiatry M.E/CFSism is about. All rather reminds me of the the British left in the 1980s - especially Militant; that ended well.

Your analysis of the role of 'scandal' in achieving change in healthcare, at least in the UK is woefully lacking. If anything health 'scandals' have frequently served to ossify the very structures that have produced bad practice, there's crtainly no evidence that they produce rapid change where there is underlying structural problems - you might want to start here: http://drphilhammond.com/blog/2011/06/23/private-eye/private-eye-1291-medicine-balls-june-22-2011/

IVI

 

[Bob]

If you can't see it I'm afraid I've run out of ways to try and show it.

My earlier explanation was based on an understanding of statistics.
I should have taken a bit more effort to explain it.

If the average improvement was 'zero' (or slightly higher than zero), then you can't have any people making improvements, unless an equal number of patients were making equal deteriorations, in which case the therapies would be equally harmful as they were beneficial.
So either no one improved/deteriorated at all, or an equal number of patients improved and deteriorated by an equal amount.

Or you could have lots of patients making small gains, and a few patients seeing very large deteriorations.
Or you could have a few patients making large gains, and a large number patients seeing small deteriorations.

None of the above scenarios are helpful, because the therapies would have been demonstrated to be harmful to a subset (small or large) of patients.

So unless they were able to identify the subsets (which they can't) then those results are not helpful.

 

[Holmsey]

You say, "I was the third person that morning who he'd effectively signed off through work related stress issues"

Was it a respiratory infection that kept you from working, or stress? What did the doctor put down in the notes as the cause for your illness?

Bit personal and I also think the answer is already in my post but here you go in any case, my GP put the reason for my absence as 'recurrence of ME/CFS symptoms', what would you expect him to put for the physical crash I clearly stated I was in?

There is a big difference and it is very important to clarify since you work for a major insurance company. Stress related disorder only qualifies for 2 years long term disability, because it is considered a mental illness.

Take my word for it, like supermarkets, not all insurers are the same, what you get is dictated by what you pay, or rather the terms of your cover as in my case. My employer supplies a range of services including occupational health services, through those my employer now recognizes me as working disabled under the appropriate legislation and I've since had working from home support written into my contract so that the same cannot be done to me again. That's as much detail as I'm prepared to go into regarding my employer for reasons I hope will be apparent without the need to spell them out.

To clarify, I was not implying that I was signed off with 'mental stress', or that my situation was one of a psychological disorder, rather that my GP was interested in why after 18 months of good management I'd ended up back in a crash, I'd call that good doctoring.

Having established that the factors taking me out of my available energy envelope were not within my control, but down to an unsupportive manager, he expressed the opinion that I was effectively 'managed to a crash' and commented that he had already signed two people off that morning through having been pushed to hard at work, a GP who cares more about his patients than the corporate machine, they really exist.

When I wrote 'work related stess' I might just as easily have said work related pressures, I did not intend to infer he had defined the actual illness of those two patients as mental in nature, maybe both were made to knock in too many nails and had tennis elbow, I don't know. I suspect it's more likely both were 'mentally stressed' though, because again, I know how common supporting such illness is for a major insurance company.

My own 'work related issue' was that I didn't have enough available energy to deal with both the additional journeys in and out of work and concurrent respiratory infections, after eight months, four with concurrent infection, I crashed. Prior to that I'd been treated with both antibiotics and anti-allergens by my GP, as much in hope as anything else, in the end he concluded that if I allowed my body the space to heal it would, he was right, it took around four weeks, I returned to work after five against his advice.

 

[Holmsey]

Further I’m not at all focussed on psychiatry – the only reason I’m involved in discussion about psychiatry is because others, are themselves adamant about the necessity of making anti psychiatry an integral part of M.E/CFS advocacy. In my view that is ill judged to the point of absurdity, and actually threatens to hijack M.E/CFS advocacy in a cause that is of no conceivable benefit to people affected by M.E/CFS.

IVI

Well said and I'll happily second it, we're all effected by any attempt at advocacy, good or bad. It's yet to be seen how the C of M's recent attacks on SW, supposedly made in our name, will play out. It may be that someone of import sits up and takes notice, and I hope that is the case, that a sequence of events which are game changing are set in motion and we benefit, but just as likely it won't and we'll never know how many turn their backs on us because they see the whole field as a poison chalice.

 

[alex3619]

I have no idea what any of that means. It all sounds very grand but has nothing to do with M.E/CFS except maybe M.E/CFS as some kind of cypher for a subunit generation of Neos - is that what you mean by 'in general' ? In which case how does that relate to to anything I've written (which is located in wholly specific real world circumstances) ?

I didn't specify (because the previous context had alreadydefined it) but my reply to Orion was specific to the UK - we have wide spread concern about violence toward and harrassment of health care professionals, additionally and in common with other countries there is concern amongst researchers about the long standing threats to individuals and to institutions. It will not take very much to ensure that M.E/CFS advocacy is seen as egregious a source of encouragment of harrassment against both medical staff and researchers who are deemed 'acceptable targets', as is currently the ALF.

It's interesting that you don't see the need (or even disirability) for any unified approach by M.E/CFS organisations, and that you expect some/many to maintain good relations with psychiatry(and thus deflect any backlash against harrassment actions) - perhaps you consider these organisations and their members and supporters to be the useful idiots for your anti (psycho)psychiatry revolution ? Whatever it's an interesting position and I guess it leaves pragmatists like me with a clear idea of what the anti psychiatry M.E/CFSism is about. All rather reminds me of the the British left in the 1980s - especially Militant; that ended well.

Your analysis of the role of 'scandal' in achieving change in healthcare, at least in the UK is woefully lacking. If anything health 'scandals' have frequently served to ossify the very structures that have produced bad practice, there's crtainly no evidence that they produce rapid change where there is underlying structural problems - you might want to start here: http://drphilhammond.com/blog/2011/06/23/private-eye/private-eye-1291-medicine-balls-june-22-2011/

IVI

[You earlier stated:]

When we are talking ‘toe to toe’ – it’s not M.E/CFS advocacy against psychiatry, or even a minor school of psychiatry. The potential opposition would be a combination of all health professionals, and all scientists.

The logic of those who want to pursue advocacy via conflict is: that all M.E/CFS patient organisation should engage in a fight with psychiatry.

My comments are in the context of those comments - maybe I should have quoted your post. Many health professionals and scientists are taking a stand against issues in the overpsychologization occuring in modern psychopsychiatry. So our opposition is not all and will not be all.

Change from scandals depends on the scope and the nature of the enquiry. When the terms of reference are biased then the outcomes will be too. However if there is enough public outrage, if the scandal is big enough, then a whitewash will not fly. It all depends on the scandal. If a dozen big scandals break in one year do you think a thick coat of whitewash is going to cover the stains?

 

[user9876]

Having established that the factors taking me out of my available energy envelope were not within my control, but down to an unsupportive manager, he expressed the opinion that I was effectively 'managed to a crash' and commented that he had already signed two people off that morning through having been pushed to hard at work, a GP who cares more about his patients than the corporate machine, they really exist.

One of the things that the Tymes trust do well is give advice to schools on how to manage pupils with ME. Your story made me wonder if there are organisations that give employers advice not particularly ocupational health but guides for managers etc.

 

[Valentijn]

It's interesting that you don't see the need (or even disirability) for any unified approach by M.E/CFS organisations, and that you expect some/many to maintain good relations with psychiatry(and thus deflect any backlash against harrassment actions) - perhaps you consider these organisations and their members and supporters to be the useful idiots for your anti (psycho)psychiatry revolution ? Whatever it's an interesting position and I guess it leaves pragmatists like me with a clear idea of what the anti psychiatry M.E/CFSism is about.

There is no "anti psychiatry M.E/CFSism", except in the minds of certain psychiatrists and yourself. I have never read a post by someone with ME that was anti-psychiatry. I see ME patients carfeully evaluating biological versus psychological research and theories, and concluding that the biological theories are much more sound. And I see psychiatrists claiming that conclusion is evidence that ME patients are anti-psychiatry.

What I do not understand is why those psychiatrists insist that rejecting psychiatric or psychological theories for the perpetuation or initiation of ME/CFS symptoms means that we are anti-psychiatry. As someone who clearly shares their beliefs, perhaps you could explain it to me? There seems to be a huge gap in the logic there that I am unable to navigate.

And then, of course, that anti-psychiatry accusation is used by those same psychiatrists as an explanation as to why we insist on having physical symptoms, versus accepting their assertion of perpetuating psychological problems. Which really makes me wonder if you're jumping on board the "ME patients are anti-pyschiatry" boat for the purpose of demonstrating the same conclusion.

 

[alex3619]

And you jumped from talking about what i was talking about to bio v psyc, never mind.
In the original post were I included the papers upon which the 1 in 4 figure was gleened, I included the numbers for those ranging form a GP visit, considered to be psyc related to those institutionalized.
I then offered a personal anecdote which supports the 'type' of GP visit which is undoubtedly considered a 'psyc' visit, I then moved to a general example, the view clearly held by a leading US based heath care insurer and enabler.
I don't see that as arguing from the specific to the general, I see it as offering a specific example and a more general example which supports the original study based conclusions.

I can't however offer any comment on your opinion as to whether these really count as psyc 'events', clearly for me when I visited my GP I was in a physical state of exhaustion, not depression or phobia.

Your reply was about my comment on misdiagnosis by psychiatry. That was the scope. You are rewriting your own arguments. It was in reply to the line of mine you yourself selected to reply to: "Do one in four really have a mental health issue every year?" It failed to address the very question you seemed to want to address. So it cannot be construed in any other way than as part of a bio vs. psych argument since you made no other provision.

 

[Holmsey]

One of the things that the Tymes trust do well is give advice to schools on how to manage pupils with ME. Your story made me wonder if there are organisations that give employers advice not particularly ocupational health but guides for managers etc.

Hi, I don't know is the easy answer, but certainly any of our corporate clients would get the same care I got from the same team now that it's in house, here's the story if you're up to reading it.

I'm in my sixth year with this illness, at the beginning I went from no absence to lots of absence and my manager didn't get it, that's why I was referred to Occ Health the first time, back then we used an external company for employee's and I had no idea what to expect, in fact I was particularly hostile because I knew I was doing everything I could to stay at work, mad as it sounds I love my job, not my employer but certainly my job. It took quite a bit of coaxing on her part to have me co-operate but I'm glad I did, when she heard how I was being treated you could see the change in her demeanor, at the end she outlined what would be going in her report, the gist of it was that where I was off for days I should have been off for weeks, and where I was off for weeks it should have been months, beyond that she really filled them in on the ICD coded neurological illness and what it meant for them and me. Things really changed with my manager after that, found out a couple of years latter that the Occ Health nurse had outlined what she saw as the failings in my management to personnel.
By three years I was dealing with Dr. Myhill in Wales, that led to a further external Occ Health review and to my working from home support. The new manager to which I refer came at a time when the company had brought all Occ Health services in house, really he was just p*****d that I couldn't attend some meetings so he revoked my privileges pending another review. In house they hadn't a clue why they were being asked to look at me, I'd had virtually no absence in 18 months, by the time an outline of what they were being asked to assess was drawn up a couple of months had gone by, then there came the GP contacts, and Dr. Myhill contacts, that itself required another assessment as my last was more than a year earlier. I insisted that they pay for it as they wanted it, that dragged it out for a few more months, after all, my privileges being revoked suited my new manager. Ultimately Occ Health said they would pay it, by then they knew I was in and out of my GP's surgery with recurring infections and getting more sick by the week. Finally I broke and they took over, one phased return to work later, and a lot of communication between Occ health and personnel and I was declared 'working disabled' and my WFH arrangements were put into my contract with a clause which basically says they can't be changed without medical evidence that my condition has significantly improved.

I have no idea who trains the Occ health staff but both internal and external those guys really put the patient first, I'd buy any of them a drink.

 

[Holmsey]

Your reply was about my comment on misdiagnosis by psychiatry. That was the scope. You are rewriting your own arguments. It was in reply to the line of mine you yourself selected to reply to: "Do one in four really have a mental health issue every year?" It failed to address the very question you seemed to want to address. So it cannot be construed in any other way than as part of a bio vs. psych argument since you made no other provision.

I can't provide an argument which proves it either way, I provided references to papers which support the figure and I provided experiential examples to support why I'm prepared to accept it's true. I'm prepared to accept that you don't accept it's true, and that I won't be able to change your mind. But I've got no more chance of proving it one way or the other than you have.
Hope this helps,

 

[natasa778]

Bit personal and I also think the answer is already in my post but here you go in any case, my GP put the reason for my absence as 'recurrence of ME/CFS symptoms', what would you expect him to put for the physical crash I clearly stated I was in?.

Ooooh, how about this personal anecdote: a close friend was recently diagnosed by his doc with 'work related stress', that his doc used to explain away his physical symptoms. He wouldn't budge when friend explained that loves his job and has never had it better, feels really good about everything in life etc. Nope, the doc still insisted it was all due to stress. ("stress in retrospect" as was "probably relating to his old job" )

Well it turns out that his physical issues were not caused by a "mental health" problem at all - they were all actually side-effects of the medication my friend was on at the time. All the symptoms (present for a good few months) stopped overnight when he stopped taking that med.

It turns out the doc didn't even look at his medical records, or if he did, this level of detective investigation (as in look at what meds your patient is on and figure out if they could be causing a problem..) was waaaay beyond him. Never mind that those side effects were listed as common on the packaging. Much easier to sherlockholms it on stress. God knows how many patients he whisks away with his magic wand of stress.

1 in 4 suffering from "stress" and "mental health" problems?! Mmmmmmmm yes if you count cases like this one

 

[Holmsey]

Ooooh, how about this personal anecdote: a close friend was recently diagnosed by his doc with 'work related stress', that his doc used to explain away his physical symptoms. He wouldn't budge when friend explained that loves his job and has never had it better, feels really good about everything in life etc. Nope, the doc still insisted it was all due to stress. ("stress in retrospect" as was "probably relating to his old job" )

Well it turns out that his physical issues were not caused by a "mental health" problem at all - they were all actually side-effects of the medication my friend was on at the time. All the symptoms (present for a good few months) stopped overnight when he stopped taking that med.

It turns out the doc didn't even look at his medical records, or if he did, this level of detective investigation (as in look at what meds your patient is on and figure out if they could be causing a problem..) was waaaay beyond him. Never mind that those side effects were listed as common on the packaging. Much easier to sherlockholms it on stress. God knows how many patients he whisks away with his magic wand of stress.

1 in 4 suffering from "stress" and "mental health" problems?! Mmmmmmmm yes if you count cases like this one

Hi Natasa, sounds horrific, glad I don't have that particular GP, presumably though your close friend knew there was an issue with the diagnosis and that's what led to him finding the right answer.

I'm not defending the 1 - 4 figure, I accept it at face value for the reasons I outline in #234, but neither I nor anyone else can prove it right or wrong.
Seems in this thread we get caught up in opinions around specifics, I think the point a few of us are trying to make is that there is a societal place for the psyc's, in fact I think there emergence was probably initiated by this time in human evolution, a direct response to the pressures society has placed upon itself but that's a whole different discussion for a whole different time. The point is that they're not going away and even when we finally understand this illness they'll still be there, and still valued by society as a whole.

 

[barbc56]

Another personal story. I seemed to be in an unusually severe flare.I finally went to the doctor, on the verge of collapse,.He ran a series of tests "on stat" to get the results within a half an hour and it turned out my sodium level was so low I was immediately hospitalized. (He would have hospitalized me anyway.). Low sodium has many of the same symptoms of me/cfs.). In the meantime, he had researched one of the medications I was on, and the next day took me off of it and replaced it with another medication. Sure enough, it was the medication and my sodium has been normal since then.

There is a process in the US where doctors can report adverse events. My doctor did this. Now the medication has a warning that it can drop your sodium level as there were a lot of the same adverse events reported.

So which anecdote can we use to generalize how me/cfs patients are treated by the medical profession?

Could it be that it just "depends" which doctor you get? I would think that would be the most obvious answer.

Barb C.:>)

ETA, I also had an incident before getting sick where just the opposite happened and something was attributed to stress when it wasn't, but I won't bore anyone with the details.

 

[ukxmrv]

Barb, just to come back to the UK clinics and UK treatment of PWME. If you had a "flare" in the UK they wouldn't run any tests that would come back in half an hour. In fact you would be lucky to get any tests at all. I've never had a test for low sodium in a crash.

If the same happened to you here you would need to see your GP. It would be a "post code lottery" on how quickly that would be. I'll use my own as an example. You would need to be well enough to call the clinic for an appointment at a particular time. If you were so badly crashed that you could not call the clinic at (for example) 9-10am then it's tough luck for an emergency appointment. If you call them later to make an appointment to see your GP then it could easily be a 2 week wake.

For an emergency you would need to keep calling at 9-10am each day on the days you were well and see if anything is available.

The other option would be to turn up at A&E (your local hospital). This would mean (in my area) a wait of at least 2 hours and the only seating very uncomfortable. If you cannot physically sit on a seat and need to lie down you face possible abuse from the staff and anger from other patients due to the overcrowding. At least that is what happens in my area

Once you see a doctor or nurse the thought in their head will be that you are having a panic attack or "it is just part of ME". I'm basing this on my experience. They won't test for low sodium or treat it as an emergency. It's "just" a possibly mentally ill person or a malingerer making a fuss.

The Fatigue clinics where you are seen once a year doesn't have a doctor on call or anyone you can talk to. The next appointment there may be months away.

I've never had a UK doctor attribute any crash to a medication or test for known problems as a result of a crash. I've only ever had it done routinely if the doctor presribes something unusual and there is a computer generated message that advises him to check something.

You said that you had an experience of the opposite but my experience in the UK is that this is the norm. Just trying to explain what happens here. No reply needed. This is just for understanding I hope.

 

[Holmsey]

There is a process in the US where doctors can report adverse events. My doctor did this. Now the medication has a warning that it can drop your sodium level as there were a lot of the same adverse events reported.

Same in the UK Barb, back at the begining of this I was given a muscle relaxant, only took one tablet and even when I had my eyes closed in the dark I could see lights, it was a bit frightening. I didn't immediately click it was the tablets as I was on so many and I had so much going on, next night same thing, then on the third night I didn't take one. By the time I was back at my GP I'd tried going back on them with the same effect.
My GP indicated in the UK that you can raise a red or amber flag, he raised an amber against this drug as that particular side effect wasn't recorded.

 

[Shell]

Same in the UK Barb, back at the begining of this I was given a muscle relaxant, only took one tablet and even when I had my eyes closed in the dark I could see lights, it was a bit frightening. I didn't immediately click it was the tablets as I was on so many and I had so much going on, next night same thing, then on the third night I didn't take one. By the time I was back at my GP I'd tried going back on them with the same effect.
My GP indicated in the UK that you can raise a red or amber flag, he raised an amber against this drug as that particular side effect wasn't recorded.

Strictly speaking its the same here. There are yellow pages at the back of the BNF (Brit National Formulary) where side effects or bad stuff happening can be recorded and sent to the drug company.
How often is this done? I don't know. I do know that I was prevented from doing so when a patient of mine became very sick on a fairly new antipsychotic drug. I was told only doctors can complete the yellow forms. Nurses who actually spend the time with the patients and see what happens are not allowed - I was told.
I knew very well that no doc would complete such a form as the kick backs were too good.

Even us humble nurses got Clozaril post it notes, pens and the occasional mug.

The system stinks like an old midden.

 

[barbc56]

I would think in the state I was in, considering my symptoms my treatment would not have been as awful as some describe. Any doctor knows symptoms are taken into consideration when making a differential diagnosis, especially in an emergency. If a friend hadn't driven me to the doctor, I would have called an ambulance and fortunately the doctor was able to get an IV started in his office. But that's really neither here nor there as the intention of my post was making the point that individual experiences may not necessarily be reliable when it comes to making generalizations about the health system.

I'm not saying the system is perfect nor people don't get treated in a manner thats not the best for them. I would feel for tany person whether they had me/cfs or not as no one should be treated in such a manner.

It's so unfortunate that there have been so many exaggerated stories, quotes taken out of context, everything seen as a conspiracy theory, advocacy that has backfired,etc., etc., etc. This only leads the general public, the medical community and the very politicians who might help us with out cause, think experiences from patients are not true or at best exaggerated. As a patient this concerns me as IMHO, it has taken away from getting closer to better medical care and understanding of me/cfs. Who would have thought our credibility could get any lower?

I don't think that Wessely is a god, far from it and the science, especially used for the PACE trial does need to be looked at critically. Neither are some of the "heroes" chosen by our community are gods and have not helped our credibility.

Credibility is crucial and frankly some in the patient community have not only shot themselves in the foot but the bullets have ricocheted and caused damage to others who may not hold the same views.
Barb C.:>)

ETA I didn't realize so many had posted while I was writing my post. In the states, I believe, that patients can report an adverse event but need to check that out again. I have no idea if these reports carry the same weight as events reported by doctors.

 

[Firestormm]

My comments are in the context of those comments - maybe I should have quoted your post. Many health professionals and scientists are taking a stand against issues in the overpsychologization occuring in modern psychopsychiatry. So our opposition is not all and will not be all.

Change from scandals depends on the scope and the nature of the enquiry. When the terms of reference are biased then the outcomes will be too. However if there is enough public outrage, if the scandal is big enough, then a whitewash will not fly. It all depends on the scandal. If a dozen big scandals break in one year do you think a thick coat of whitewash is going to cover the stains?

Alex. Not ALL psychiatrists or psychologists fail to understand ME! Jesus Christ. You have absolutely no idea how hard some people have been engaging with ALL medical disciplines to better ensure we are taken SERIOUSLY!

Read the damned letter published in the INDEPENDENT. Speak to those who you loathe. Engage, do not threaten or even try to distance ME from any single discipline or individual. If an individual does not 'get it' they will be distanced over time. Those from history are either keeping up or being left behind!

We need desperately to get more people on board and not less. All this "harassment" and "scandal" has achieved is to undermine our very importance. Yes. It takes time. It is slow. It is bloody frustrating. People want to move at 10,000 miles an hour in a direction they deem is more important, that changes day-by-day but we have to work with the system - AND ENGAGE.

Even if you or I raise funds for a 'biobank' or independent research institute. What are you going to research? Why? What happens when it fails? You claim to know how science operates - so you know how slow this goes and how the failure rate is high. There is no simple or obvious solution to ME. Hell, we are still unsure as to what ME is - after 50 or more years!

I sometimes wonder if people purposely misrepresent or fail to understand the term 'advocacy' because it is too much like hard work, I really do.