Nature: A reboot for chronic fatigue syndrome research

Jonathan Edwards said:
I doubt it. Sharpe and Chalder are just saying 'Not fair you meanies. I am going to tell my daddy on you!' without raising a hint of a rational argument.
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But debate involves two sides arguing, if one loses their mind it undermines their own credibility which is a good thing. I'm glad your on our side but most docs don't go hunting for the minutiae of obscure diseases they rarely enounter, they digest what they read from "informed" sources.
 
Alvin said:
But debate involves two sides arguing, if one loses their mind it undermines their own credibility which is a good thing. I'm glad your on our side but most docs don't go hunting for the minutiae of obscure diseases they rarely enounter, they digest what they read from "informed" sources.
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But the irony here is that the 'informed source', i.e. Nature has said CBT and GET are looking dodgy to the people that matter. Sharpe and Chalder have started a name dropping match they cannot win. They bring in Cochrane - very respectable and worthy. They bring in Jon Stone, whoever he may be. But the most respectable and worthy king of the castle is none other than a rag called Nature. If nobody takes Nature seriously then nobody can take anyone seriously - because to be taken seriously is to be in Nature. And that will be transparently obvious to anyone who rarely encounters ME/CFS reading Nature - 'Who are these wallys?' they will say. People love schadenfreude. They will gloat over someone being made small by Nature - because they know that you are only made small by Nature if your goal in life is to be made big by Nature.
 
Jonathan Edwards said:
Nature has said CBT and GET are looking dodgy to the people that matter.
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Looking dodgy is not enough, it needs quashing yesterday.
There is currently a child about to be taken away from her parents and put into forced GET and it appears unstoppable at present. Looking dodgy won't save her nor is it saving any of us from their attacks, the wikipedia article which is what most people see when they search for ME/CFS on google is protected from reality, when edits are made backed up with references they are quickly deleted, so the public can't easily learn the truth, they still learn the PACE type lies. They can keep digging to learn more but the official line is still CBT/GET. When your enemy is on the defensive you can ease off or make sure the job gets finished.
Sorry if this sounds preachy and i don't mean to attack you personally.
 
Alvin said:
Sorry if this sounds preachy and i don't mean to attack you personally.
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I cannot quite see what it has to do with the thread. An own goal from the other side is better than nothing as far as I can see. As I see it a further response to something so pathetic would just look like a pantomime 'no it isn't, yes it is'. Like awarding the own gaolers a free penalty kick.
 
Jonathan Edwards said:
I cannot quite see what it has to do with the thread. An own goal from the other side is better than nothing as far as I can see. As I see it a further response to something so pathetic would just look like a pantomime 'no it isn't, yes it is'. Like awarding the own gaolers a free penalty kick.
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We did get off topic but i would support a reply, anyone who comes across their statements and doesn't know better would be exposed to facts instead of sham opinions presented as real.
 
Jonathan Edwards said:
They bring in Jon Stone, whoever he may be.
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He's THE specialist of "Functional Neurological Disorder".
He created this site for patients: http://www.neurosymptoms.org/

He says that about "fatigue"
iredness is a very common symptom in patients with functional neurological symptoms.

Often despite many more obvious symptoms, people say that it is the tiredness and fatigue that really holds them back day to day.

Tiredness in this situation can also be thought of as another symptom related to a problem with nervous system functioning.

When tiredness like this occurs
• with no other neurological symptoms
• for more than 6 months
• not due to a detectable underlying medical or neurological condition
then it is called Chronic Fatigue Syndrome / M.E. (CFS/ME)

CFS/ME has been recognised as a genuine illness by the Chief Medical Officers in England/Wales and Scotland (link)

This website is not designed to discuss chronic fatigue syndrome / M.E. in detail

Fatigue may occur as part of anxiety or depression, although its important to say that you don’t need to be anxious or depressed to have persistent and severe fatigue

However, many of the principles of treating CFS/ME which have been proven to be effective in clinical trials are likely to be effective in patients with functional neurological symptoms

There are some useful resources for patients with this diagnosis. If you want to try to understand more about this or learn practical ways to manage your fatigue then I can recommend the following book available online:

Chronic Fatigue Syndrome (CFS/ME) (The Facts) by Frankie Campling, Michael Sharpe. Oxford University Press
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And recommands this book
upload_2018-1-31_18-19-22.jpeg
Editor's presentation:
Chronic Fatigue Syndrome: The Facts presents a compassionate guide to this illness, providing sufferers and their families, with practical advice, based solely on scientific evidence. It is unique in being written by both a sufferer and a physician, both of whom have had extensive experience of talking to, and helping, patients. Included in the book is a detailed guide to self-help, written from a patient's perspective, but evidence-based. The book also deals with a number of special issues, advising on how to choose therapies and therapists, and how to deal with CFS in children. The book additionally includes an overview of the history of the illness, looking at the nature and causes of CFS, and the opportunities for the future. The book will be invaluable for sufferers from CFS, their friends and families, and the numerous health professionals who come into contact with sufferers from this illness.
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Ahah, seing "compassionate" in relation with Sharpe is quite a joke. Saying he's writing from the patient's perspective is probably a touch of that famous British humour.

Jon Stone is also the author of this very very embarassing paper:
http://pn.bmj.com/content/16/1/56.long

He recently wrote a paper with Wessely:
https://www.ncbi.nlm.nih.gov/pubmed/29222085
 
Aside from the results of the PACE trial you mention (co-authored by two of us, T.C. and M.S., among others), further scientific evidence supports the effectiveness of interventions such as exercise and CBT (see, for example, L. Larun et al. Cochrane Database Syst. Rev. http://doi.org/cjp6; 2017 and J. R. Price et al. Cochrane Database Syst. Rev.http://doi.org/dcs37d; 2008).
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"Ok so the PACE trial was a big bag of shit and failed to prove efficacy for CBT an GET but other trials think CBT and GET are good and they used the same methods we did in PACE".

Not even trying to defend PACE.

Laughable response.
 
It's sad that the UK establishment is still, for the most part, pretending that there are no issues with PACE.

I think that's because this isn't just about PACE but also about other commonly held views concerning various "medically unexplained symptoms" and mental illnesses. The methodology in PACE, which seems to be widely in this particular area of medicine, is so poor that with it they could easily "prove" that homeopathy is effective for any of these conditions. The situation is akin to banks that are too big to fail.

In reality a portion of medicine is still operating according to 18-19th century beliefs that have never adequately been tested and are just assumed to be true. And if the data says "no, psychotherapy has no effect in these conditions, which goes against the commonly held belief that the symptoms have an emotional origin" they just manipulate the data.

There is a revolution waiting to happen.
 
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strategist said:
I think that's because this isn't just about PACE but also about other commonly held views concerning various "medically unexplained symptoms" and mental illnesses.
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I wonder just how much of this is about people protecting and trying to justify their jobs. They don't want their gravy train to shudder to a halt. It doesn't seem to matter that they're continuing to destroy other people's lives rather than go do something actually useful.
 
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