(not a recommendation) CFS - an update

[Effi]

Another useless literature review. From the 'physical rehabilitation team' at Ghent University Hospital. Let's exercise and be cured!

http://www.tandfonline.com/doi/full/10.1080/17843286.2016.1196862

Background: Chronic fatigue syndrome is a widespread condition with a huge impact not only on a patient’s life, but also on society as evidenced by substantial losses of productivity, informal costs, and medical expenses. The high prevalence rates (0.2–6.4%) and the low employment rates (27–41%) are responsible for the enormous burden imposed on society, with loss of productivity representing the highest cost. The objective of this review is to systematically review the recent literature on chronic fatigue syndrome/myalgic encephalomyelitis.

Methods: The published literature between 1 January 1990 and 1 April 2015 was searched using the MEDLINE, Cochrane Library, and Web of Sciences databases. The reference lists of the selected articles were screened for other relevant articles.

Results and conclusions: Despite extensive research, none of the proposed etiological factors have shown strong, reproducible scientific evidence. Over the years, the biopsychosocial model integrating many of the proposed hypotheses has been gaining popularity over the biomedical model, where the focus is on one physical cause. Since the etiological mechanism underlying chronic fatigue syndrome is currently unknown, disease-specific treatments do not exist. Various treatments have been investigated but only cognitive behavior therapy (CBT) and graded exercise therapy (GET) have shown moderate effectiveness.

 

[sarah darwins]

Thanks, Effi. And thanks Ghent University Hospital. I needed to be reminded that I'm a burden on society.

 

[Effi]

@sarah darwins Their choice of words is pretty remarkable, isn't it?

 

[SilverbladeTE]

"We don't know the cause of the Black Death, it is surely a scourge sent by God on these unrighteous wicked people, but we do know that making patients run around a bit helps them in that they expire soon after, saving us the expense of treating them, and they are thus soon off to their reward or punishment in Heaven.
Jewish and Moorish barber-surgeons say otherwise they are ungodly, uncivilized heathens who have no proof!"

note in Dark/Middle Ages Jewish and Moslem doctors were the best and despite persecutions any nobleman who could would have such a doctor in vast preference to their truly awful Christian counterparts (I can't recall name of the Christian who learned the skills of the learned ones and brought that knowledge to Europe, since this damnable illness has messed my brains up so I have terrible trouble recalling peoples' names!)

"Barber surgeons" were the norm for much of European history after the fall of Rome and before the Industrial era, simple medics who often by trial and (fatal) error learned setting bones or amputating limbs etc.
most were in the bad sense of the word, "butchers", though some were talented just very ignorant of things.
It is used in my above passage as an insult a supposed "doctor" would use against an actually skilled physician they were jealous of.


Point being...people don't really change much.
Crap we are enduring is same kind of crap just expressed differently.
Ignorance, bigotry, political/financial chicanery and fraud etc.

 

[A.B.]

Over the years, the biopsychosocial model integrating many of the proposed hypotheses has been gaining popularity over the biomedical model, where the focus is on one physical cause.

Should read: a group of confused psychiatrists and psychologists have kept producing research that allegedly demonstrates the validity of a psychosocial approach but is actually so flawed as to be useless. The checks in place that are supposed to weed out bad research have failed, and a lot of people have been misled as a result. The validity of the psychosocial approach may just exist in the minds of those who believe in it.

Oh and the biggest research funding agency in the world, the NIH, has recently announced it wants to seriously study ME/CFS. Francis Collins commented that "psychiatrists don't have the right skillset for the task" (or something along those lines). I would love to hear a comment by the authors how they reconcile this with the quoted statement.

 

[Invisible Woman]

Confused my ***!

No. A few of psychiatrists wanted to build themselves a nice little empire and make a lot of money. They realized they could better achieve this by denigrating their patients instead of trying to help them. They received grants and funding by delighted multinational insurers who could save a lot of money not paying out on their policies for sick people. In turn this delighted various states - heck it would be bad for the patients to give them benefits and support!

In turn other psychs thought - wow, an easy way to make money and I don't even have to work very hard or be very successful at treating patients. In turn psychologists saw a gravy train and jumped on.

As for being a burden on society: even though I am sick and not productive, even though I do seek medical care from time to time, I will never be as heavy a burden on the state as these self interested s*ds. They not only leech money from the state, they are a burden on the patients they allegedly try to help. Not to mention that if they actually were the clever scientists and researchers that some purport to be millions of us worldwide would be happily contributing to state coffers and the communities around us.

...and breathe...end of rant.

 

[Asa]

Piggybacking to the moon on wingless monkies has shown moderate effectiveness, as determined by influential persons doing important things you can't understand -- and which are top secret!

 

[Comet]

Thanks, Effi. And thanks Ghent University Hospital. I needed to be reminded that I'm a burden on society.

I prefer to see it as society being a burden on me. At least until thinking about my disease changes.

Yes, this is mostly said tongue in cheek. Mostly.

 

[Comet]

Confused my ***!

No. A few of psychiatrists wanted to build themselves a nice little empire and make a lot of money. They realized they could better achieve this by denigrating their patients instead of trying to help them. They received grants and funding by delighted multinational insurers who could save a lot of money not paying out on their policies for sick people. In turn this delighted various states - heck it would be bad for the patients to give them benefits and support!

In turn other psychs thought - wow, an easy way to make money and I don't even have to work very hard or be very successful at treating patients. In turn psychologists saw a gravy train and jumped on.

As for being a burden on society: even though I am sick and not productive, even though I do seek medical care from time to time, I will never be as heavy a burden on the state as these self interested s*ds. They not only leech money from the state, they are a burden on the patients they allegedly try to help. Not to mention that if they actually were the clever scientists and researchers that some purport to be millions of us worldwide would be happily contributing to state coffers and the communities around us.

...and breathe...end of rant.

I don't think they initially threw us under the bus on purpose.

However, at this point there is enough information available that there is no excuse for 'experts' :thumbdown: in the field not to see it and act on it.

To claim expertise, propose treatment for millions yet ignore a huge amount of information and patient feedback which directly contradicts their theories is (still), in my opinion, unconscionable.

I think that according to the QMUL transcripts, certain psych proponents are aware of this website. This seems like a direct admission of willful ignorance of vast amounts of ME/CFS knowledge to me, but what do I know. Perhaps they should be more willing to use PR's wealth of information for self-education.

As far as your rant @Invisible Woman, I totally hear you. .

 

[Invisible Woman]

I don't think they initially threw us under the bus on purpose.

Maybe not all of 'em but I'm afraid in my opinion some of them - the original psychobabblers - did. A certain psychiatrist assured social services in Wales that he was experienced in dealing with ME. He was working with them on a pediatric case. I believe they were taking a young pwME into care with his assistance.
At the time he was qualified a mere 2-3 years, but from what the Countess of Mar said, he still assured Welsh social service of his ample experience. Not exactly forthcoming with the truth. His career went on from here.

 

[Comet]

Maybe not all of 'em but I'm afraid in my opinion some of them - the original psychobabblers - did. A certain psychiatrist assured social services in Wales that he was experienced in dealing with ME. He was working with them on a pediatric case. I believe they were taking a young pwME into care with his assistance.
At the time he was qualified a mere 2-3 years, but from what the Countess of Mar said, he still assured Welsh social service of his ample experience. Not exactly forthcoming with the truth. His career went on from here.

Anything is possible with these people, I guess. I can't wait to have something tangible to make them stop (or slow down, refocus, etc.). It's such a waste of precious energy to fight against this kind of thinking for the truth. Being heard really shouldn't be this difficult.

 

[duncan]

A flipping-the-bird emoticon would come in handy right about now.

 

[Art Vandelay]

As for being a burden on society: even though I am sick and not productive, even though I do seek medical care from time to time, I will never be as heavy a burden on the state as these self interested s*ds. They not only leech money from the state, they are a burden on the patients they allegedly try to help.

Wessley has been a burden on the taxpayer to the tune of £18,000,000.

 

[Invisible Woman]

Wessley has been a burden on the taxpayer to the tune of £18,000,000.

Glad to know our suffering is benefiting someone!

Where does that figure come from @Art Vandelay ?

 

[Art Vandelay]

Where does that figure come from @Art Vandelay ?

@Invisible Woman it's from: http://powerbase.info/index.php/Simon_Wessely

Which states that it's from Wessley himself:

Simon Wessely’s website, accessed 4 September 2013

 

[Chrisb]

Wessley has been a burden on the taxpayer to the tune of £18,000,000.

This introduces ideas which could engage us for weeks. Let us assume the figure is correct. It presumably only gives half of the picture for assessing the "burden" on the taxpayer.

How much has his work saved the taxpayer by reducing other possibly more expensive medical interventions and care? How much might he have saved in the costs of benefits which might have been otherwise payable?

I have no idea, but suspect that, viewed in one way, he might have benefitted the "taxpayer" by transferring costs to those "taxpayers" or former "taxpayers" unfortunate enough to suffer from the conditions with which he has chosen to entertain himself.

 

[Hutan]

How much has his work saved the taxpayer by reducing other possibly more expensive medical interventions and care? How much might he have saved in the costs of benefits which might have been otherwise payable?
I have no idea, but suspect that, viewed in one way, he might have benefitted the "taxpayer" by transferring costs to those "taxpayers" or former "taxpayers" unfortunate enough to suffer from the conditions with which he has chosen to entertain himself.

Without Wessley et al, there may have been a cure or at least a useful treatment many years ago. Considering both the PWME and their carers, that's a lot of person hours that could have been used productively - with taxes paid and welfare benefits not needed. (Throw in all the hours that could have been worked by people with other diseases written off as psychosomatic and it's an even bigger amount.)

Even just having a reliable biomarker so that people could be sure they have ME would be less costly for society than PWME dragging themselves to doctor after doctor trying to work out what their problem is. To say nothing of the cost of actually providing CBT and GET programmes and of removing sick children from their parents. And the cost of people becoming sicker when they have pushed beyond their limits.

Delaying the finding of biomarkers, treatments and cures multiplies the net cost to society, not just to PWME and their carers.

Wessley has therefore been an enormous burden on society, not just in the UK, but globally.