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http://niceguidelines.blogspot.com/2014/10/megan-arroll-psychologist-uel-many.html]http://niceguidelines.blogspot.com/2014/10/megan-arroll-psychologist-uel-many.html

Friday, October 24, 2014   

Megan Arroll, Psychologist UEL:  many ME/CFS pts have found CBT and graded exercise therapy damaging   

Megan Arroll, Psychologist, University of East London:
 

 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4159366/

Excerpts

"Psychol Res Behav Manag. 2014; 7:213-211.

Results
Significant differences were found in the areas of chance and powerful others’ locus of control, and sleeping difficulties, but not in ME/CFS symptomatology overall.

Conclusion
The specialized online program described in this study warrants further investigation, as it appears to influence perceived control and key ME/CFS symptoms over time."

(my bolding)
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http://www.thealmanac.net/article/20141024/NEWS/141029959

Congressman Murphy convenes “Path 2 Cures” roundtable Published Oct 24, 2014 at 2:43 pm (Updated Oct 24, 2014 at 2:43 pm)


 Dr. Pamela McInnis, a deputy director at National Institutes of Health, explains improvements, but also troubles, of clinical trials and their publication.  David Singer/Staff
 
Meeting in the Mt. Lebanon public safety building during a solar eclipse, patients and disease advocates told a deputy director of the National Institute of Health they feel burned on how clinical trials are often left in publishing purgatory.
“We’re increasing how we share data, but it’s still shocking the number of trials that aren’t finishing or being published ... that’s dooming us to repeat trials and we don’t know what happened last time,” deputy director of translational sciences Dr. Pamela McInnes said.
A roundtable of advocates and health professionals representing everything from mitochondrial and rare genetic disorders, to common diseases like diabetes, was gathered by Congressman Tim Murphy (R-Upper St. Clair) on Oct. 23 to get feedback on how to improve the discovery of new medicines and deliver treatments out of trial stage sooner.
“The FDA approved prednisone (for pulmonary fibrosis) in 2012, two years after universal feedback that this drug was good to go and had minimal side effects. That (September 2012) meeting was useless. We found out after the fact they were already going to approve it. Why didn’t they do this in 2010?” asked James Uhrig, who has idiopathic pulmonary fibrosis.
Fast-tracking drugs could be helped, McInnes said, by having patients more directly involve themselves with clinical trials.
“Contact NIH, contact a department of Genetic and Rare Diseases Information Center ... we have to start respecting patients as part of the process instead of simply the object of examination,” McInnes said, “but the problem is we need to start treating all diseases as having something in common; there are underlying factors to rare and common disease groups; let all boats rise to the top at the same time.”
Though for some patients, that analogy more than falls flat, as some have mobility issues or are diagnosed with a disease that sees little research funding and awareness. With campaigns and celebrity status attached to diseases like Parkinson’s and the recent Lou Gherig’s ALS ice bucket challenge, patient groups like those with the rare but debilitating Chronic Fatigue Syndrome, or Myalgic Encephalomyelitis, are finding being part of a clinical trial just isn’t an option.
“I understand their frustration. Chronic fatigue has such a wide range of manifestations and we’re still having trouble defining it... I was originally involved when doctors were looking for a viral biomarker, and, nothing.”
“We need more rare disease advocates. We’re not getting the funding or the attention we need, often because we’re immobilized or stuck in a wheelchair or a bed,” Chuck Mohan of the United Mitochondrial Disease Foundation said. “Remember: the ark was built by amateurs; the Titanic was built by professionals.”
Meantime, McInnes says hysteria and “the closeness” of Ebola has now made it an “economically viable” virus to treat because pharmaceutical companies are now interested.
“Despite thousands dying abroad, now that it’s hitting us at home, you’re going to see drugs start coming on the market, a vaccine perhaps, in as soon as a few years.”
Other patients at the meeting said they deal with chronic diseases that they say are difficult to deal with financially.
“Treatment for those just in remission, or relapsed multiple sclerosis, is $60,000 a year,” said Frank Austin, of the MS Society, who has stage two multiple sclerosis and is wheelchair-bound. “My hope is that Congress makes sure cost is not a barrier to treatment.”
Julie Cerrone of the Arthritis Foundation said there is a bill on Capitol Hill that could help chronically ill patients more easily afford treatment.
“Right now it’s a co-pay, and it can sometimes be hundreds each time. H.R. 460 would implement a percentage formula for cost-sharing of treatment instead of costly co-pays.”
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http://niceguidelines.blogspot.com/2014/10/megan-arroll-psychologist-uel-many.html

Friday, October 24, 2014   

Megan Arroll, Psychologist UEL:  many ME/CFS pts have found CBT and graded exercise therapy damaging   

Megan Arroll, Psychologist, University of East London:
 
 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4159366/
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The author fails to mention situations such as 30 years of 'psychiatric claim to and control over' the very serious physical disease--Pandemic / Plague of ME/CFS--and all the HARM to patients with that -- using psychiatric treatments for depression--CBT and GET --blaming patients for illness beliefs.

These so-called 'treatments' lead to worsening of the disease and even death.
Children are ripped away from their families and imprisoned in psyche wards for years--treated despicably and with disdain--blamed for having the BIO disease of ME/CFS--and treated with psychiatric protocol.  Often contact is DISallowed with their family.
These so-called 'treatments' lead to worsening of the disease and even death.

It is BARBARIC treatment and attempted control over a disease with a very ill community of patients.

It is deceit and corruption like this that has caused the global spread of ME/CFS--and those responsible for this HARM to humanity ought to be held accountable.  This 'psychiatric behaviour' is a DISgrace to the profession!

And Sir Simon Wessely is right in the thick of it--and is now President of the Royal College of Psychiatrists!  Talk about the pot calling the kettle black and acting as the representative of psychiatry--SHAMEFUL.

Psychiatry needs to back off of claiming ownership to anything that doesn't have an immediate medical answer.  This mindset HARMS health and destroys lives--let's see what other physical diseases that psychiatry has claimed in the past:

epilepsy
polio
MS

to name a few.
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How about they just stop 'horsing around' .  .  . keeping themselves in business.

We need a BIO fix--not more coping systems, 'fluff,' and/or harm.  STOP wasting everybody's time and money and life and put money into REAL efforts!  This continued 'WASTE' continues the HARM to ME/CFS patients.

Yesss, indeed, there is Megan Arroll--the invitee to IOM meeting who subsequently became UNinvited.
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I noticed one of the authors were Meghan Arroll of that wellness center from the UK who was supposed to speak at the IOM.

Very interesting!

Looks like there has been more than just "twitterverse" monitoring to counteract the press!
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4159366/

Psychol Res Behav Manag. 2014; 7: 213–221. Published online Sep 2, 2014.   doi:  10.2147/PRBM.S63193

Pilot study investigating the utility of a specialized online symptom management program for individuals with myalgic encephalomyelitis/chronic fatigue syndrome as compared to an online meditation program

Megan A Arroll, Elizabeth A Attree, Clare L Marshall, and  Christine P DanceyAuthor information

Abstract

Background

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a long-term, debilitating condition that impacts numerous areas of individuals’ lives. The two predominant treatment options for ME/CFS are cognitive behavioral therapy and graded exercise therapy; however, many people have found these techniques unacceptable or even damaging.

This pilot study aimed to evaluate the utility of a specialized online symptom management program for ME/CFS in comparison to an online meditation program in an effort to ascertain whether this tool could be a further option for those with ME/CFS.

Methods

This experimental design consisted of two interventions: a specialized online symptoms management program (N=19) and a control intervention based on an online meditation website (N=9).

A battery of questionnaires, including measures of multidimensional fatigue, illness-specific symptoms, perceived control, and mindful awareness, were completed before the participants commenced use of the programs and following 8 weeks’ use.

Results

Significant differences were found in the areas of chance and powerful others’ locus of control, and sleeping difficulties, but not in ME/CFS symptomatology overall.

Conclusion

The specialized online program described in this study warrants further investigation, as it appears to influence perceived control and key ME/CFS symptoms over time.

Keywords:
ME/CFS, perceived control, sleep, outcomes, online intervention

Full text: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4159366/
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 Did anyone else read that article as a personal cry for help from the author?
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http://theconversation.com/the-real-crisis-in-psychiatry-is-that-there-isnt-enough-of-it-32076

 October 23 2014, 1.04am EDT 

The real crisis in psychiatry is that there isn’t enough of it
 

 Author
  •     Simon Wessely    Professor of Psychological Medicine at King's College London
   Disclosure Statement
Simon Wessely is President of the Royal College of Psychiatrists


Psychiatry is apparently in crisis – again. On the one hand, psychiatrists are agents of social control, carrying out society’s bidding to ensure that the socially deviant are kept locked up out of sight and mind. And, despite having little idea of what causes the disorders they claim to treat (which some critics claim don’t exist), they remain set on medicalising more and more aspects of human existence. More still, psychiatry is a pawn of the pharmaceutical industry, peddling drugs that either don’t work or make you worse.

The thing is, none of these claims are either new, or radical. Look up “psychiatry in crisis” on Google. And then stand well back. Since I started my psychiatry training in 1984, not a year has passed without a clutch of articles, papers and opinion pieces discussing this “crisis”. A random selection of articles shows that we have been in crisis because of recruitment (1982), lack of political clout (1984) and public image (1985). In 1997 The Lancet published an article on perceived biological bias. A few years later in the British Journal of Psychiatry it was for not being biological enough … You get the picture.

The launch of another revision of the Diagnostic and Statistical Manual (DSM-5), the American handbook for classification, precipitated an outpouring and claims of a “deep” and “recurring” crisis, while a letter in World Psychiatry this year at least concluded that there was still hope for us.

 Detaining patients Yes, psychiatrists do detain patients (as do social workers, and indeed psychologists). In May 2014, 11,965 people were detained in hospitals under the Mental Health Act. However, in the same month, 963,769 people were in contact with secondary mental health services. In other words only 1.2% of those being managed by psychiatric services were detained.

Any humane society has a duty to try and look after its citizens when, as a result of a mental disorder, they pose a serious risk to themselves or others. And if this is the case, then it is better that it is sanctioned by law and implemented by health professionals, rather than by vigilantism and mobs. True, we don’t have the balance right yet, but not in the way the “crisis” lobby would have you believe. Take jail, for example, there are far too many people in prison with serious mental illness – not too few.

 Treatments and causes Treatments are certainly far from perfect. But no more than in the rest of medicine; a recent review showed that treatments used by psychiatrists, both physical and psychological, compare well to treatments in routine use in other branches of medicine.
There remain doubts and uncertainties about the causes of many of the disorders we see. But this is not because we are ignorant, lazy or complacent; it is because psychiatric disorders, such as major depression, arise out of a complex set of circumstances – starting from your genetic inheritance, early upbringing, the relationships you make and the physical and psychological traumas and adversities to which you are exposed to in adult life. The issues with which we grapple are rarely simple or straightforward.

Not for us the simplicities of some other parts of medicine. Here is a cancer – take it out. There is a bug – kill it. In psychiatry, the ability to tolerate uncertainty is an essential skill. Because we have to negotiate fuzzy boundaries – between eccentricity and autism, between sadness and clinical depression, between hearing voices and schizophrenia – and there will always be boundary disputes.

Far from backing away from such debates, my experience of psychiatry is that we relish them. We are not the only branch of medicine that argues about classification – so do tumour biologists – but the difference is that the issues that we face in classification are more readily understood by the general public.

If there is a little bit of crisis, like argument and discussion it keeps us on our toes, alert to new developments, and is an antidote to complacency.

 Agony uncle I recently took over as president of the Royal College of Psychiatrists. Since then I have had numerous interactions with patients and carers – and also a large post bag. Most of the patients and carers that I have met have been particularly grateful to mental health services; there are criticisms, but nearly all speak warmly of the psychiatrists and mental health teams that they meet. Not all letters I’ve received have been complimentary, but the main themes have not been about our services, but the lack of them.

A frequent complaint is how long it has taken for parents to get skilled mental health assessments for troubled children. Another is how stretched services are, or how many patients don’t receive enough support to assist them staying on vital medication, without which relapse is all-too common and all-too ghastly. Others lament the lack of specialised services, at present especially in child psychiatry and addictions.

 The continuing reduction in the number of beds available for crisis care is another repetitive theme: patients in severe distress been driven hundreds of miles in a desperate search for care and sanctuary.

The reality of hard-pressed services struggling to cope with increasing demand and shrinking resources mocks the charge of our critics that we are engaged in a vast conspiracy to force more and more aspects of normality into needing these services.

The real crisis in psychiatry is that there isn’t enough of it.
 

Simon Wessely’s article is part of a wider discussion on The Conversation about psychiatry in crisis. You can read more from David Pilgrim, who believes it is, and Peter Woodruff, who argues that it isn’t.
 
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