THE NICEGUIDELINES BLOG: Summary of AfME's severe ME symposium ...

Doctor Speedy and ME in search of medical honesty

Friday, November 14, 2014

Summary of AfME's severe ME symposium ...

Posted by Dr Speedy at 9:59 AM

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Labels: CBT, CFS/ME, Cool Blogging Therapy, GOBSART, ME, ME/CFS, Psycho blah blah, RESEARCH, Science

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# PET scans show widespread neuroinflammation of the brain
# The hell of a disease that is incurable, has inadequate therapies, indifferent government attitudes, social stigma and no strong public voice
# Oncologist Professor Mella: Rituximab treatment suggests that ME/CFS is an autoimmune disease
# significant impairments in immune regulation in MEcfs with similarities to a number of autoimmune disorders
# Marked recovery of CFS symptoms during methotrexate treatment
# Revalidation Update: why doctors who use or promote CBT or GET for ME/CFS will fail their revalidation
# American FDA: "ME/CFS is a serious
or life threatening disease”
# Prof Racaniello: the CDC has stumbled when tackling CFS, dismissing evidence that CFS is an organic disease, diverting funds designated for CFS to other programs
# Prof Behan on BBC ALBA: electron microscopy shows abnormal mitochondria in Myalgic Encephalomyelitis, and we have known this since the 1980s
# Cerebrospinal fluid profiles can differentiate between Lyme disease, ME/CFS and healthy controls
# Harvard Medical School: EEG spectral coherence data distinguish chronic fatigue syndrome patients from healthy controls and depressed patients
# I never imagined my sister would die from ME
# Dr. Michael Knops, Charité, Berlin: chronic immune activation in ME/CFS

# Dr Snell, University of the Pacific, California: ME/CFS patients have a reduced capacity to exercise when they repeat a maximum exercise test one day on – unlike healthy controls
# eye movement dysfunction in ME/CFS patients
# subset of patients with CFS improve within the first 3 months of valganciclovir use
# Professor Simon Wessely: the primary symptom of ME is post-exertional muscle fatigability not fatigue
# BIG MULTIPLE SCLEROSIS BREAKTHROUGH: first treatment to reset the immune system
# GET (graded exercise therapy) is torture for ME patients and directly contravenes the do NO Harm principle of the GMC
# Study demonstrates that 95% of ME/CFS Patients have Anticardiolipin Antibodies, suggesting that ME/CFS may be an autoimmune condition
# Study using cycle ergometers shows that exercise exacerbates ME/CFS
# A big thank you to Dr. Judy Mikovits
# Almost 5% of ME/CFS patients contracted ME/CFS from a blood transfusion
# Markedly Impaired Cardiac Function in Chronic Fatigue Syndrome
# World exclusive: Prof Wessely admits in the BMJ that there were no ME/CFS patients in the ME/CFS PACE trial
# Short version of the International Myalgic Encephalomyelitis Consensus Criteria for GP's and consultants.pdf
# FULL version of the International Myalgic Encephalomyelitis Consensus Criteria.pdf
# The main characteristic of ME is an abnormally delayed muscle recovery after doing trivial things, if you don't have that, you don't have ME
# Dr. Hilary Jones, When you say, "ME is controversial", did you check that with Alison, Annabel and Sophia? Now, I'm sure you didn't, because all three officially died of ME. Yes you read that right, …
# The putative agent of ME/CFS can be transferred to monkeys
# PACE trial's Prof Peter White: Exercise causes Immunological damage in Chronic Fatigue Syndrome and is NOT safe
# Highly increased incidence of non-Hodgkin's lymphoma in HIV/AIDS and ME/CFS
# PACE trial results are out: ME is caused by an oncogenic virus
# When CBT fanatico's get ME they run away from silly CBT as fast as possible !!
# Journal for Psychotherapy 2011: CBT and GET are ineffective and potentially harmful for many ME/CFS patients
# Jan 2011, Spanish study shows that CBT and GET make things WORSE in ME/CFS !!!
# Pacific Labs in California (Snell, Stevens et al): it is dangerous to put patients with M.E. through a graded exercise program
# Tom Kindlon's paper: "Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome".pdf
# Professor Wessely: A placebo is MORE effective than CBT
# Jan 2011, Spanish study shows that CBT and GET make things WORSE in ME/CFS !!!
# European Parliament approves protective system against CBT psychiatrists
# Why CBT psychiatry is unethical
# Is CBT psychiatry a disability? PACE research in The Lancet suggests it is
# Premorbid risk markers for growing nose syndrome in a large cohort of CBT psychiatrists
# Operation Mincemeat aka the PACE trial, a thrilling true story of deceit and survival

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# Prof Racaniello: the CDC has stumbled when tackling CFS, dismissing evidence that CFS is an organic disease, diverting funds designated for CFS to other programs
# Professor of Psychology Rhona Johnston shows that ME/CFS is NOT a psychological condition (on a UK Government website !!!) … a MUST READ
# Professor Wessely: A placebo is MORE effective than CBT
# Prof. Klimas: CBT does not cure (25% of) ME/CFS as claimed by Prof. White
# Now we know why Professor Klimas did CBT research, thank you Professor !!
# Top ten biomedical research findings in ME/CFS by Professor Komaroff
# New randomised controlled trial shows that CBT and GET make things worse in ME/CFS
# Karl died of Lyme disease because no doctor in Australia believed in neuroborreliosis
# The right state of ME
# Dr Melvin Ramsay (1986 !!!) : persistent virus infection is responsible for ME
# A MUST READ if you are XMRV positive
# Dr Dusty Miller: Why XMRV is NOT contamination
# New study cast further doubt on the denialibity of XMRV
# The retroviral penny has now dropped
# CFS subjects have a shortened life-span and are at risk for developing lymphoma
# Why exercise is bad for ME/CFS
# The main characteristic of ME is an abnormally delayed muscle recovery after doing trivial things, if you don't have that, you don't have ME

"Plenty of people are still dying of diseases which other people do not believe." (Dr. M.N.C. Dukes).

CBT and GET for ME: "There is no nonsense so gross that society will not, at some time, make a doctrine of it and defend it with every weapon of communal stupidity."

Robertson Davies

THE NICEGUIDELINES BLOG VERSUS THE NICEGUIDELINES

These are NOT the NICEGuidelines. This is "The NICEGUIDELINES BLOG." What are the differences:

The NICE Guidelines are biased publications based on the GOBSART (Good Old Boys Sitting Around a Table) approach.

This Blog however is not only evidence based but also uses critical reading to judge papers and articles. I also use common sense and listen to others. And finally I read both psychiatric and medical evidence and opinions from around the world to come to a conclusion.

I’m not sponsored by anybody or paid by whatever company as seems to be the norm with many psycho people who publish the same article almost on a weekly base.

So if you value an opinion, formed as a result of participating in many ME activities, for example being bed bound for years, you have come to the right BLOG. All these activities have allowed me to form an opinion as a Doctor and as a Patient. And that is important as the voice of the latter is discarded by many including NICE.

If you don’t read this blog, you will miss out on “accredited” medical education. If you do read it, you may actually become a doctor who doesn’t stop thinking or forgets to ask critical questions. Many good things, including satisfied patients are at your command.

So, if you arrived here for the straightforward GOBSART approach, I will disappoint you. If you are interested in forming your own opinion about ME, and other interesting things, read on!

About Dr. Speedy.

I am a Family Physician or GP as it is called in Australia or the UK. I am also an ME patient unfortunately. Bedbound that is. So at the moment I’m in private practice so to speak. I’ve got only one patient, ME, or is it me?

I graduated as a doctor a long time ago, and I am the founder and editor of The NICEGUIDELINES BLOG, an internet based ME BLOG that is devoted to critical reading and cheering you or ME up.

I have the following conflict of interest: I would like to get better and see that the wasting of public money on CBT (talk therapy for a neurological disease, really helpful) and other silly therapies for ME stops, and will be used in better ways.

My goal has always been to help, and if possible, cure patients. With this disease you will soon find out that many psychiatrists and psychologists are only in it to make money and get their name in the spotlight. And what happens to and with the patients is irrelevant.

I stand to benefit both mentally, physically and also financially if this silliness would stop, and I would get my health back, and I can go back to work and have a normal life again. Please evaluate my postings with this in mind! And remember, there are also (lots of) psychiatrists and psychologists who haven’t switched their brain off.

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Important Sites to Check Out

2010 Revised Canadian Myalgic Encephalomyelitis Chronic Fatigue Syndrome criteria.pdf
Article: The PACE Trial Invalidates the Use of Cognitive Behavioral and Graded Exercise Therapy in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: A Review
Biomedical ME/CFIDS
CFS Central
CFS Patient Advocate
Cinder Bridge
Dr Simon Wessely, no not that one
Follow ME in Denmark
GP revalidation !!!
Glasbergen Cartoons
HOPE FOR FM AND CFIDS SUFFERERS
It's only ME, it's not my mind
Life as we know it
Living With Chronic Fatigue Syndrome
ME Agenda
Me Free For All
NMJ's velo gubbed legs
R.E.S.C.I.N.D.
SOPHIA AND M.E.
ahummingbirdsguide
blogging not jogging