Depression Poll

[chipmunk1]

But they do not say that. Most posts make sweeping generalizations against an entire profession and lately it is getting very tiring for me to read and I leave PR feeling hurt and insulted unless I just stick with the birthday threads, doggie threads, joke of the day, and the Prayer Tree.

They are not attacking you personally. There is a reason for the posts.

I am learning from you guys what is going on in the UK and Netherlands but it is new for me.

It can happen anywhere i think.

USA

Last March I attended the Stanford conference on CFS/ME and experienced something that was very interesting. I was sitting next to a Psychiatrist who also was attending the meeting. He claimed he had a number of CFS/ME patients and wanted to learn more about this disease. About 2/3 through the conference, he began to cry. I asked him if he was ok. His response was guilt for treating his group of patients with CFS/ME for depression and not realizing that they had a severe chronic disease and were suffering from non validation of their problem. He learned during his continuing education in psychiatry that "chronic fatigue syndrome" was a psychiatric disease, only to later learn from attending the conference the horrible misjustice that has been perpetrated by his profession on these ill patients.

UK/Europe

Anyone who's been incarcerated in a psychiatric ward with ME CFS will tell you this, where psychiatrists can legally starve ME CFS patients and won't even give them fluid (water) unless they 'walk' for food like an obedient dog. This still happens in UK and Europe and presumably other parts of the world

Australia

Anecdotally this was suggested by a psychiatrist to one of our members - ECT is the next step when CBT does not work.

Germany

There was never any moment of pity or compassion for me being in that condition. Only attributions of guilt. It was all my fault. My "soul did it". I "had to work harder on myself". I must be severely masochistic without even being aware, huh? No, neither. Otherwise I would have enjoyed the forced bathes instead of avoiding them.

After some time I could shower for two minutes without almost passing out after. But she and other people there (not all, but way too many) continued pressurizing me on that and other stuff. I´m traumatized. And they were always right because staff and doctors, and I was always wrong because psychotic in their eyes. Unfortunately my "belief" that I am almost completely bedbound continues. Only for all the huge benefits and attention (haha) I gain from it.

 

[MeSci]

Participation to research is voluntary and many choose to participate.

For many cancer patients it is very much a Hobson's choice. It's the only way they can get (temporary) access to a possibly-effective drug, when their cancer has become refractory to all previous drugs, or they cannot get funding for other drugs that they have helped to get licensed by participating in previous research. The alternative is often inevitable and quite-imminent death.

 

[Undisclosed]

PR is a laughing-stock among people with M.E. That is not a compliment.

Which people with ME, specifically, aside from yourself?

That's an interesting question @Valentijn

It seems to be a very small group of people. They have been very busy posting on a Facebook page today -- a previously banned member from here posted a link to this thread and said:

I put this up so patients can see what PR is trying to do. They are helping the psychs to try and make us look like we have depression. We have a physical illness. Exactly why would they put this out there other then to help make it look like we are just depressed.

Then there were a whole bunch of lies posted by a few people. There is a lie that we banned a member and then deleted all their posts. Funny that because the person is still a member here. Then another member here also posted a lie on the FB page (not the first lie) regarding something I apparently didn't do related to moderation, but I did.

Then somebody else posted (hasn't been here for eons) posted:

The patients are terrorized there privately in emails, they are harrassed and intimidated by the people running that place like that. Anyone who can harm patients in such a fashion need to be avoided and the patients need to start reporting that place

That is a bald faced lie. No staff here harasses or intimidates members.

Apparently, none of us have ME. We are stooges for Wessely.

The member that was banned for breaking multiple rules posted the following:

So the true patients are going there and clicking that they don't have depression. The fact that thread is up and the other ones talking about UFO's is making true ME patients took bad. It is the Wessely and Bad Science trolls doing that.

So true patients don't get depressed? That is so ridiculous. So because we have a community lounge that allows any conversational topic, it is making patients look bad? That is ridiculous? So PR is a bunch of trolls? Ridiculous.

If you FB posters bothered to read the thread, you would know that you are so far away from reality, some might consider you to be deluded.

It's unfortunate that you spread lies just because somebody dares to mention depression in the same sentence as ME.

And that @Valentijn is where Anabel is coming from.

 

[Cheshire]

@Gingergrrl


The only support (apart from my GP) I received came from mental health professionals.


They all told me I hadn’t any psychiatric issue, they listened to me and they were much kinder than all the physicians I encountered. One sighted when I was referred to her like "oh not again one patient whose disease is not understood thrown away to the psychiatry dustbin".


The problem is not with all psychiatry, it's with bad psychiatry and the assumption that psychotherapy is the cure all answer.


I have no doubt that some mental health professionals are really committed to helping people, and manage to do so, but I have no doubt either that some are very detrimental to patients.


There are bad professionals everywhere, and those who think ME is a mental disorder driven by dysfunctional thoughts and maladaptive behavior are amongst the obviously worst, and they are likely to be the ones we are confronted to. I was lucky with the mental health professionals I met, not everybody had the same luck.

 

[Butydoc]

@Gingergrrl


The only support (apart from my GP) I received came from mental health professionals.


They all told me I hadn’t any psychiatric issue, they listened to me and they were much kinder than all the physicians I encountered. One sighted when I was referred to her like "oh not again one patient whose disease is not understood thrown away to the psychiatry dustbin".


The problem is not with all psychiatry, it's with bad psychiatry and the assumption that psychotherapy is the cure all answer.


I have no doubt that some mental health professionals are really committed to helping people, and manage to do so, but I have no doubt either that some are very detrimental to patients.


There are bad professionals everywhere, and those who think ME is a mental disorder driven by dysfunctional thoughts and maladaptive behavior are amongst the obviously worst, and they are likely to be the ones we are confronted to. I was lucky with the mental health professionals I met, not everybody had the same luck.

Hi Cheshire,

Very sorry to here about your country's horrific,tragic loss.

Much sympathy,
Gary

 

[Undisclosed]

I don't know what treating depression has to do with the falling of a religion and I don't know how you can treat depression without looking at the biological, psychological and social needs of the individual patient. I have kept my mouth shut for six months of posting on PR while people literally every day trash the profession that I devoted my life to and at this point it is just too tiring for me and a real drain on my energy so I am speaking up even if that means I do not stay on PR.

I don't really think most members are trashing the whole profession. It's those Psychologists/Psychiatrists that refuse to believe ME patients are not mentally ill. That's who I am talking about when I refer to 'psychobabblers'. Don't take it personally, it's not about you. You have devoted your life to psychiatric patients by holistically understanding all their needs -- pyschosocial, spiritual, physical etc. This isn't what the 'psychobabblers' do -- they don't say anything other that they believe ME patients can be cured by CBT and GET.

Their are things on PR that annoy me and upset me and I just choose to ignore them. I haven't been on a forum yet that hasn't had something that bothers me.

 

[Antares in NYC]

I recently watched again "Requiem For A Dream", an extremely difficult yet well directed film about addiction, and there was a scene that resonated with me. There's a scene where the character Sarah is in full decay, after her doctors keep pumping her up with psych pills and antidepressants after getting her first hooked on weight loss pills.

In the movie her doctors won't even make eye contact or spend more than a few seconds with her, but write her prescription after prescription of heavy medications. I can personally recall MANY, MANY instances where doctors (usually general practitioners) would not even let me finish my explanation about brain fog, or memory loss, or sleep disturbances, or crushing fatigue, and then start writing prescriptions for the latest antidepressant.

A very harsh and heart-breaking movie to watch, but I have to say there's a lot of truth in this scene, and I couldn't' help but identify with my own experience battling ME/CFS:

Again, the movie deals with a different subject matter (the film is about addiction, not ME/CFS), but the disdain that many medical "professionals" show their patients is well reflected in the movie. I'm sure many of us can identify with that.

 

[Gingergrrl]

This thread has taken off in so many different directions, it is hard to even know where to respond. Tomorrow is my step-daughter's 13th birthday and I have been running around the entire day (as much as someone with ME/CFS in my condition can run around LOL) getting stuff ready for tonight and tomorrow. I am going to practice forced resting next (thanks to Kimsie) until our dinner this evening so if I am not responding further, it is only because I am resting and I don't have the energy to quote individual posts right now.

@Valentijn (and everyone else) I want to explain that I never felt any negative post was actually directed at me personally (and I am not that narcissistic or delusional to think it was about me!) But when my career and profession are disparaged over and over again the entire six months that I have been on PR, it got to the point where I had to say something or else I just had to leave the board and then people would never know why I left. So I preferred to speak up no matter what the consequences may be.

I have been trying to think of an analogy and apologize that this is not the best one but the only one I can think of off the top of my head. If there were frequent anti-gay comments on PR (and there are NOT and this is just an analogy) then a gay person with ME/CFS might feel they should not post about that aspect of themselves. If they finally did and people said, "Oh no, we don't mean you or even the gay people in your country, we mean these other people..." it would still feel dismissive and hurtful. And you can fill in the blank for any group of people in my analogy.

People make comments on PR all the time that social workers/therapists are lazy, stupid, etc, and just in this thread it was said that they sit behind a desk doing no work just taking people's money as well as that we are tools or brainwashed, etc. The social workers/therapists that I worked with as far back as my first volunteer job to the present were probably the single most hard working group of people that I ever encountered. We worked over time for little pay and often purchased supplies for our patients with our own money.

I also want to respond to two other topics in this thread and the first is re: cancer. I fully agree that there is no longer any stigma to cancer and that it is usually very well-funded and services are available to patients that are lacking in other diseases. But sometimes, I feel that people post as if this status is the fault of the cancer patients or if their lives are easy and this bothers me. My husband's first wife died of a rare cancer, multiple myeloma, at age 39 and no one could figure out why she was stricken with this illness as she was so young and no family history. In her last two months, no traditional or experimental treatment helped her and she suffered a stroke, congestive heart failure, and a very painful death leaving behind a two year old (my step-daughter) and devastating her parents who lost their only child. So sometimes the comments that make light of cancer like it is a party compared to ME/CFS, do feel dismissive to me.

And lastly, as Gary said, I want to express my condolences to @Cheshire and anyone else in France re: the horrific murders in your country this week. I thank God for PR and the right to free speech and am so sorry this happened. Je Suis Charlie (I hope I spelled that correctly!)

 

[Aurator]

I don't really think most members are trashing the whole profession. It's those Psychologists/Psychiatrists that refuse to believe ME patients are not mentally ill. That's who I am talking about when I refer to 'psychobabblers'.

I too am certainly far from trashing the whole profession. Unfortunately though, when we see the official line the profession are expected to take with ME/CFS patients, it's difficult not to see the whole profession as being complicit, willy nilly, in unacceptable beliefs about the nature of the illness. Below is an excerpt from the 160+ page Pace Trial document entitled "Cognitive Behaviour Therapy for CFS/ME- a Manual for Therapists":

"Beliefs: about the cause of the illness and why it is persisting

Exploring the participant’s beliefs about their illness is essential before you discuss the CBT model for CFS/ME. It is vital that you incorporate their own beliefs into the CBT model that you discuss with them so that they feel that their opinions matter and have been taken seriously...It is useful to gain an impression of their strength of belief in the cause, particularly if they feel that it is caused by something physical, e.g. a virus... If a participant is convinced that their CFS/ME is caused purely by something physical, e.g. an ongoing virus, you will need to carefully address their beliefs during the course of CBT to broaden rather than directly challenge causal attributions.

A purely physical attribution of illness may be a block to overcoming their CFS/ME. "

The full document can be seen here:
http://www.pacetrial.org/docs/cbt-therapist-manual.pdf

 

[zzz]

Naturally, on this forum and wider society some ME and organic CFS patients have had their lives devastated by psychologists and psychiatrists accusing them of being depressed (when they aren't) and some patients becoming permanently relapsed by following the advice by therapists (such as OT's and physical therapists) that exercise won't harm them, and it 'works' for CFS. In extreme cases, patients can die from this advice, like the UK Member of Parliament who collapsed and died after attending a Gym after being advised he could exercise himself well.

Do you have a link for this, @Research 1st? (The MP bit)

This is a very famous incident; there are many sources. For example, from Professor Malcolm Hooper's Magical Medicine: How To Make A Disease Disappear, page 15:

On 13th December 1988 Brynmor John MP died from ME/CFS. His experience of the illness was all too familiar: ‘Though there is only a slight gradient from our house to the main road, it could have been the North face of the Eiger. I just could not get up it’. He found himself unable to dress; the slightest exertion exhausted him and it took days to regain his strength. He was irritated by the profusion of psychiatric comment and was trying to ensure better understanding of ME/CFS (Perspectives, Summer 1991:28‐30). Brynmor John suddenly collapsed and died as he was leaving the House of Commons gym after having been advised to exercise back to fitness.

From The Hummingbirds' Foundation for M.E.:

Research has also proven that how much physical and cognitive overexertion a person can tolerate without serious damage depends on the severity of their illness. For example, we know that moderately affected patients can die from exercise sessions. For example, there is the case of the UK MP Brynmor John who had M.E. and was advised to ‘exercise himself back to fitness’ and who as a result of complying with this advice collapsed and died coming out of the House of Commons gym.

From Wikipedia:

The circumstances of his later life and premature death are cited by physicians postulating one school of thought concerning treatment of chronic fatigue syndrome. Brynmor John had been diagnosed with the illness, and died suddenly immediately after exiting the House of Commons gym. He had been following an exercise regime based on what is argued to be unfounded medical advice: that sufferers may exercise their way toward a cure for the illness. [1] [2]

Someone needs to fix that Wikipedia page (and probably many others), as the biological explanation for ME/CFS is simply termed "one school of thought". Nevertheless, the circumstances of Brynmor John's death are correctly reported.

@Min has also described this incident in this post on PR.

MECFS Assist has a whole Web page entitled ME/CFS Can Be Fatal, containing a number of similar cases. I came across this page while searching for evidence after my doctor told me firmly, "No one has ever died from CFS!"

[ETA: Fixed the Wikipedia page. We'll see how long this lasts...]

 

[GracieJ]

@zzz Do you know if it was heart failure in this case?

 

[zzz]

@zzz Do you know if it was heart failure in this case?

Yes; from the obituary in the New York Times:

LONDON, Dec. 14— Brynmor John, a Welsh legislator who served in the Labor Governments of Harold Wilson and James Callaghan during an 18-year career in the House of Commons, died Tuesday of a heart attack. He was 54 years old.

On another note, I would like to respond to Aurator's post:

I too am certainly far from trashing the whole profession. Unfortunately though, when we see the official line the profession are expected to take with ME/CFS patients, it's difficult not to see the whole profession as being complicit, willy nilly, in unacceptable beliefs about the nature of the illness. Below is an excerpt from the 160+ page Pace Trial document entitled "Cognitive Behaviour Therapy for CFS/ME- a Manual for Therapists":

The quoted excerpt is not an official line of anyone except the Wessely school, which may be extremely influential but has no official status. And although this manual and the views it represents may be extremely influential in the U.K., the same is certainly not true in the U.S. So when you say, "Unfortunately though, when we see the official line the profession are expected to take with ME/CFS patients, it's difficult not to see the whole profession as being complicit, willy nilly, in unacceptable beliefs about the nature of the illness," this appears to be an overly broad generalization in which the views of a certain segment of the profession are incorrectly generalized to the "whole profession."

In the U.S. and Canada, although it is common for doctors to refer patients with ME/CFS to psychiatrists, it is equally common for the psychiatrists to report that the patients have no psychiatric illness, and to send them back to the referring doctor.

 

[Kati]

[QUOTE="Gingergrrl, post: 544116, member: 15021]

I also want to respond to two other topics in this thread and the first is re: cancer. I fully agree that there is no longer any stigma to cancer and that it is usually very well-funded and services are available to patients that are lacking in other diseases. But sometimes, I feel that people post as if this status is the fault of the cancer patients or if their lives are easy and this bothers me. My husband's first wife died of a rare cancer, multiple myeloma, at age 39 and no one could figure out why she was stricken with this illness as she was so young and no family history. In her last two months, no traditional or experimental treatment helped her and she suffered a stroke, congestive heart failure, and a very painful death leaving behind a two year old (my step-daughter) and devastating her parents who lost their only child. So sometimes the comments that make light of cancer like it is a party compared to ME/CFS, do feel dismissive to me.

i didn't imply that the cancer journey was easier, and since I have worked in bone marrow transplant, and inpatient units, I have seen very sad cases. However the cancer journey has a pathway that is set up for patients. It is certainly easier to navigate, and the support systems are much better equipped to activate on demand, at least in my area.

This is a huge contrast with what patients experience with ME. Better services, more respect, knowledgeable physicians, rapid access to care (surgery, specialist referrals, imaging, palliative care), funding from governments, from private donors, from pharma. And you tell the dr you have pain, they give you a prescription for opioids. (Not an easy feat for ME because you know you could get addicted.)

No one can deny the inequalities in health care.

 

[Woolie]

@Gingergrrl, I understand your concerns, and applaud your courage to express them. Many of us here have training the behavioural or social sciences including me. And my partner is a clinical psychologist.

There's no question in my mind that psychiatrists, psychologists and social workers do very important work. And although I am critical of some aspects of the discipline of psychiatry, these criticisms are of the academic type (to do with my view on the poor training in scientific method, etc.). I know a fair few psychiatrists, and find them to be extremely dedicated, empathic and respectful of their patients. And very ethical. Most are also skeptical of psychogenic theory (although it just doesn't seem to be in their tradition to challenge those sorts of ideas head on).

(btw, I also think GPs, on the whole, do a great job at navigating their vast clinical domain and offering what help they can. Its not them that's the problem, its what they're reading!).

Its worth reminding ourselves of all this from time to time, so thanks for drawing our attention to it.

But on the other hand, I also view PR as a place where people let off steam about their frustrations. So in the heat of the moment, people are just not really thinking of qualifying their statements carefully, and it helps to view it from that perspective.

Still, it wouldn't be a bad idea for us to try to gently point out when threads get a bit too globally negative!

 

[biophile]

When I last checked, 17/69 respondents (24.6%) answered "Yes" to the question "Are you depressed?". That is about the same as the 25% often loosely cited figure for general medical conditions? I think I have read before that simply asking someone if they feel depressed is more reliable than most fancy multiple item questionnaires?

The conflation of ME, CFS, and psychiatric diagnoses (usually some variant of clinical depression), has obviously caused problems which have remained unresolved. There is enough research for anyone to conclude that ME or CFS and depressive disorders are distinct. Having being diagnosed with CFS and then experiencing periods of significant depression, I can certainly tell the difference between the two from a subjective perspective.

If depression symptoms have absolutely nothing to do with ME, then how do we explain this?

ACHESON ED. The clinical syndrome variously called benign myalgic encephalomyelitis, Iceland disease and epidemic neuromyasthenia. Am J Med. 1959 Apr;26(4):569-95. PMID: 13637100.

"Mental disturbances, of which depression, emotional lability and lack of concentration are commonest, have occurred in all reported outbreaks. In most instances they appeared during the acute illness[5,8,12,14–18] but in others they first became manifest during convalescence[6,7,10]."

"On the contrary, depression and undue emotional lability have been the rule. In the acute stage, terrifying dreams, panic states, uncontrollable weeping and hypersomnia occur. In the convalescent stage the prominent features are impairment of memory, difficulty in concentration and depression. These symptoms are more consistent with cerebral damage than with hysteria."

Dowsett EG, Ramsay AM, McCartney RA, Bell EJ. Myalgic encephalomyelitis--a persistent enteroviral infection?. Postgrad Med J. 1990 Jul;66(777):526-30. PMID: 2170962.

[Table II: Symptoms and signs in 420 patients with ME]

Emotional lability* 411 98%

* Includes frustration, elation, depression.

Brown AA, Jason LA, Evans MA, Flores S. Contrasting Case Definitions: The ME International Consensus Criteria vs. the Fukuda et al. CFS Criteria. N Am J Psychol. 2013 Mar 1;15(1):103-120. PMID: 25364305.

"The ME-ICC condition had significantly higher current psychiatric comorbidity rates (61.5%) than the Fukuda et al. (1994) CFS condition (27%) [x2 (1, N = 113) = 12.79, p = .001]."

[edit: However, note that there was no statistically significant difference between the two groups for the "Role emotional" and "Mental health" components of the SF-36 questionnaire.]

I think there are a few things going on here: The pathophysiology of ME can directly induce the affective symptoms of depression (e.g. the emotional symptoms in the various ME outbreaks were regarded as having organic causes) and/or can indirectly increase susceptibility to other factors which can contribute to depression. The symptom burden, impact on life, poor treatment from others, etc, are all severe enough to become clinically depressed. The way the various categories of depression etc are clinically diagnosed is also problematic. Physical symptoms of ME and CFS can inappropriately count towards psychiatric diagnoses even without the affective components being dominant or present. I'm not convinced that the Brown et al. study quoted above adequately accounted for this. IIRC, the SCID interview (usually better than simple questionnaires) was conducted *before* the interviewer knew the medical status of the participant. This could have inflated the attribution of symptoms to psychiatric diagnoses. In general, some people may also try too hard to make their symptoms fit into a specific diagnostic criteria which does not adequately reflect the symptom.

 

[biophile]

With the issue of ME/CFS patients apparently disrespecting health care professionals involved with caring for those with psychological and/or psychiatric conditions. Here the word "psychobabble" is used to mean dressing up questionable claims in psychology jargon (there is also "neurobabble" too!). As others have already pointed out, the frustration towards "psychobabblers" is generally directed towards a specific group of people or ideas rather than all psychologists, psychiatrists, mental health nurses, etc, and this distinction may not come across well in frustrated concise posts on the internet.

For many patients though, their experience with health care professionals has been dominated by negative experiences and "psychogenic dismissal" (or equivalent), so it is not surprising that some do cast a general blanket of scorn. They have been poorly treated repeatedly by psychogenic dismissal throughout their lives by health care professionals, friends and family. The mere mention or suggestion of being depressed or anxious may bring back nasty memories, which then understandably trigger a negative response towards those who appear to make the suggestion or bring up the issue. Patients have genuine beefs, and the presence of emotional lability, a common symptom of classic ME outbreaks, would not help either.

On the other hand it is also understandable that people get angry when they perceive patients to be dismissing the significance or seriousness of psychiatric diagnoses. But if you become offended at the response shown from a patient, please keep in mind that you may be witnessing symptoms of trauma caused after years of abuse, neglect, and dismissal. It is important to remember that people have often downplayed symptoms of ME and CFS because they believe the patient is "just" depressed, or "merely" anxious, or imagining or exaggerating it in their mind, etc. While it is wrong to downplay the significance of clinical depression etc, it is only natural that being repeatedly exposed to dismissals have influenced some patients to either become reactive to the issue or at least want to distance themselves from it.

Patients also witness influential researchers, academics, administrators, politicians, etc, promoting dubious hypotheses. In the UK the head of a major psychiatry organization partly built his career on a model of CFS which is largely a collapsing house of cards. Sir President Professor Wessely is not the devil, but the uncritical support he and his fellow travellers receive from the British establishment, largely at the expense of much needed biomedical research and scientific skepticism, gives many patients a strong sense that the system has abandoned them and/or that no individual can help much.

And finally, maybe some patients are prejudiced against mental illness and are reflecting the prejudice of wider society. ME and CFS does not automatically bestow an honorary PhD on the nuances of mental health issues or the professions which deal with them, patients are otherwise ordinary people, and the same characteristics of the general population should be reflected on the ME and CFS populations, albeit whatever differences are caused by being ill.

 

[Research 1st]

Why on earth is PR asking people to vote about whether or not they're depressed? It's no wonder that so many people with M.E. (M.E., not the wastebasket diagnosis of CFS - one which includes so many people who do not have the physical disease, M.E., as defined by the WHO or the CCC or, even better, the ICC) avoid this forum, completely..

Patients creating a poll on depression is normal, not a risk to anyone with ME CFS, even if uninformed, it appears sacrosanct. Try and think of debating depression in a wider context when it comes to ME CFS:

*Neurological disease states are associated to depression, without question.
Not due to patients abnormal thinking:

*Secondary depression is not uncommon due to isolation of being disbelieved and medically neglected.
Not due to patients abnormal thinking:

*Depression can occur from abuse of medical professionals: physical, mental or in some cases, sexual.
Not due to patients abnormal thinking, but a process of others actions harming the mind.


Attempting to fix the above won't change the underlying pathology of the disease. Other than psychiatrists themselves, followers of the BPS CFS whack jobs, or doctors allied to the NHS/CDC/NIH/HSS no doctor or serious scientist believes CBT, GE or treating depression has any significant affect on ME CFS causation or maintaining disability at all.

This means asking or talking about depression be it CFS, or bedridden ME isn't offensive, it's actually quite sensible
once you realise people here with ME themselves (or those who care for them or accept PWME as equal members of society) aren't trying to suggest or 'steer' ME into a the BPS model of quackdom. It is an understandable concern of yours and others, but not all people are evil, only some!

Historically ME cured by CBT, GE, Antidepressants = FAIL. We live in this time, but will now move into the future if you are aware of science taking place behind the backs of policy makers that isn't state backed and thus is real science that studies likely actual ME sufferers rather than non ME sufferers (Oxford criteria CFS).To do this, you use inflammatory biomarkers. (We know the CDC and UK people don't like to do that for obvious reasons, they won't get funded for their next study). Sadly, in the world of ultra competitive grant applications, you must ensure on pleasing master, or if master insists you 'adjust' your research paper conclusions by altering 'language'. We all know this, it's part of the deal of 'research' and why 'science' isn't an entirely clean sport....

ME CFS patients are ignored and always will be as long as their legitimacy is in dispute. It's thus irrelevant what patients 'think', on a forum or a parking lot queuing for Xanax for their 'ME'. Patients, and patients fate are a consequence of policy. A policy out of our control.

I repeat, no legitimate scientist, researcher, or doctor believe ME CFS is a depressive disorder. No one.
If they do, ignore them. Ignore the pro-psych policy too of the NHS and CDC, it won't matter if you have the putative agents being discovered in the background that pro organic ME researchers dont' talk about.

 

[alex3619]

I have recieved very good treatment from psychiatrists, psychologists and social workers in Australia. Regular GPs and nurses on the other hand ...

Yet I cannot ignore the issues that occur all over the world that relate to psychosomatic medicine, or whatever name of the decade they choose now or in the future.

I am writing a blog on what I think psychobabble is that might clarify some issues. Its not something that should be ignore or applied universally. Psychobabble as a term first arrived on the scene about 1975. I have the original book but have not read it yet. Its appeared in academic papers for some time.

 

[Research 1st]

. Sir President Professor Wessely is not the devil, but the uncritical support he and his fellow travellers receive from the British establishment, largely at the expense of much needed biomedical research and scientific skepticism, gives many patients a strong sense that the system has abandoned them and/or that no individual can help much.
.

The system has abandoned them though.

There is no help at all in the NHS for ME, only for chronic fatigue syndrome. With no monitoring of the patient, no post diagnosis screening, the patient is left to fend for themselves. Period.

There is not a single evidence based treatment for ME or CFS using science as evidence. (Required in medicine).
There is not a single test for ME so we don't know who has ME.
Anyone with unexplained fatigue not explained by standard tests for other conditions can be told they have ME!
DOH referes to ME as CFS/ME. ME thus is not allowed to exist functionally on its own.
Not a single biomedical ME clinic exists. CFS clinics exist who dish out CBT/GE to alter 'beliefs' of disease, such as ME!
Not a single drug exists for ME or CFS.
Research focuses on Fukuda CFS criteria. This is not a disease but chronic fatigue and 4 or more symptoms.
PEM isn't even a requirement for Fukuda, despite this (or worse) being a hallmark of ME!

So there isn't a 'sense' patients have been abandoned, the grave stones of dead patients who only reached their 20's and 30's (After adolescent infection) and people with crippling arthritis, heart failure, autonomic damage and cancers say they have been abandoned.

If one believes ME is chronic fatigue, then I am wrong. ME isn't chronic fatigue though and only was in the eyes of psychiatrists who deny ME and ignore the world health organisation and the rule of UK law.

With new technologies, novel pathogens are being found in PWME. Psychiatrists have said in published research and other official documents that become 'guidelines' not to test CFS/ME patients further post diagnosis, including not to screen for inflammatory or immune markers such as IgG subclass deficiencies. That was clever wasn't it? Because it means that inflammation and immune suppression was never found associated to certain classes of infection.

Having said that, the UK situation is uniquely abusive against patients alongside other European countries and I imagine the UK has the highest kill ratio of the patients they have killed over the years through reckless policies of blaming them for their own organic disease and not researching and not developing drugs to help reduce their symptoms of inflammation and metabolic injury.

It's also important to remember psychiatrists are more likely to get to abuse children and young people with ME, as the youth are far more likely to be manipulated psychologically and agree to 'therapies' by force or by co-coercion. Conversely, adults with ME CFS outside state health care delivery (socialized health care), are more 'aware' generally, and as they are over 18, tend not to be kidnapped by the state for having bedridden ME CFS.

A well known young person who was abused by NHS professionals in the past, was Ean Proctor. He was only abused by NHS nurses, because the nurses believed the 'evidence' presented to them by doctors, that ME was a psychological fatigue based syndrome, amenable to increased activity. He was thrown in a swimming pool when alleged to be 'fake paralyzed' and put on a 'ghost train' at a fair by NHS staff. This only happened, because of psychiatry. No other reason.

3.08 onwards on the video link above to hear the abused ME patient talk about what happened to him. I would like to show you Karina Hansen's interview but she can't do one as she's bedridden and appears still to be locked up by psychiatrists in 2015 not in the UK, but Denmark. https://www.facebook.com/JusticeForKarinaHansen

Thus people posting here, as adults, who escaped being abused at the hands of psychiatrists, won't understand or even recognize the institutional abuse that happens in the UK, against children and young people with ME. Sadly, it is happening. Fortunately Dr Nigel Speight speaks out about this, and can be seen on the excellent DVD documentary on UK ME abuses of patients called 'Voices from the Shadows'.
http://voicesfromtheshadowsfilm.co.uk/dvds/

How PWME CFS aren't depressed en mass, I don't know. Maybe fear or abuse drives people into a state of perpetual anxiety. That would seem possible.

I know when I was left in my own bodily waste by NHS physicians in an NHS hospital, I did often think of suicide. This was only done to me, because of doctors who falsified my school record and more, mostly to blame my mother to invent a theory on Munchhausen's as my mother believed me I was ill, and cared for me when bedridden which infuriated the doctors (not psychiatrists) I saw. Depression, I was lucky not to develop. What if I had? It's so scary to think of the depressed PWME CFS with bed ridden ME. Do they exist or are these the people who resort to self termination through lost hope?

If we can get psychiatry out of ME as a mainstay international therapy that doesn't work (And give psychiatry as an optional therapy that may help some secondary problems if they occur) then things will improve.

 

[Valentijn]

No one can deny the inequalities in health care.

That I can agree with. I don't envy cancer patients, but we could definitely use a more accessible system - or any system at all, in many countries.

(off-topic rant)
I think much of the issue is that the health care and benefits' systems have never really put any effort into making themselves accessible to anyone. They sit there, and wait for us to go to them - to find the right doctors, to navigate insurance and applications for benefits, to arrange transportation when too ill to sit up for whatever reason, and to hire lawyers to fight them when we are automatically rejected from various programs the first time around.

It's generally patients and their foundations who have created ancillary support necessary for patients to get the additional help that they need, including the help to actually utilize the health care and benefits' systems. And that support is accordingly targeted just toward their specific groups.

Hence we might have a cancer foundation, an AIDS foundation, an elderly foundation, and an MS foundation which are all doing exactly the same thing for different patient groups. The short term solution is that we get our own ME foundations involved in this sort of support (with charitable funding I guess), but the more sane solution is that government agencies 1) stop fighting patients, 2) give patients reasonable support in navigating their agencies and other programs, and 3) support patients in having all of their needs met relating to their medical status.

Of course, none of that is likely to get funded or even ideologically supported by governments, especially in the case of ME/CFS and other "unexplained" diseases where they think they can afford to turn a blind eye. So maybe we really do need to find a way to work on getting real support for each other - both with organized, coherent, and easy to find info on forcing government agencies to help us as required, as well as with a public uproar anytime a patient is denied appropriate assistance by agencies or is psychologically or physically abused by any doctor or other therapist.

I want it to be unacceptable for them to even think of sectioning (involuntarily committing) someone for having ME/CFS or some other unexplained illness. I want the administrators of clinics to fear the shitstorm that would result if they pushed ME patients to ignore symptoms and exercise more. I want politicians to fear for their jobs if they allow their lackeys or systems to abuse and neglect us. I want the media to fear being publicly ridiculed every time they equate ME with fatigue.

These things can happen - can you imagine the uproar if HIV patients were officially denied medical care and encouraged to cure themselves by changing their "stressful lifestyle"? Or if teenage MS patients were taken away from their parents for "refusing" to go to school, and then sectioned for refusing to believe that they're just hysterical? Or if terminal cancer was downplayed by the media to be a minor issue because non-malignant tumors are often safe and easy to remove (it's all on the same spectrum, after all)? Or if elderly patients were mocked by hospital staff for not being able to get to the bathroom and left to either endure agony or wet themselves and be humiliated?

For anyone with a conscience, those things aren't acceptable. And for anyone with a brain, it's obvious that such treatments aren't appropriate for anyone, specifically including ME patients. But too many politicians, government agencies, media outlets, and clinics don't have consciences or brains - they have to be forced to do what is right, or to at least stop doing what is wrong.

Support from quality medical research should do most of the job for us, but we already have quite a bit of that, and it isn't doing much on its own. We need to become big and organized and powerful enough for them to fear us. That's the only way that the abuse stops, and the only way that we have some hope of widespread and appropriate treatment.

(/off-topic rant)