Prevention? Prevention needs some sense of the cause(s), if I am not mistaken.
Yes, there are tentative, speculative causes. But all the so far presented "definitive" causes of ME/CFS share one thing in my eyes: complete lack of credibility. There is no trustworthy research pointing to an cause.
And would prevention look like?
For pathogens, it would be the prevention of the spreading of that pathogen. Problem is, there is no identified pathogen. Horning/Lipkin draw a blank. So against which pathogen do you want to prevent? Problem is, there are no known ones.
Sure, the psych*-doctors know that it is the patient who is to blame. Excuse my sarcasm, but to them it is the patient who is doing something wrong, in his/her wicked ways, as patients are – the patients simply "need" guidance by professional psych*-doctors. So their "prevention" would be some form of "education". Maybe teaching "resilience to fatigue"? Problem is, they think the disease exists in the minds of their patients, but their disease model exists only in the doctor's heads, not in reality.
Or do you want to somehow target groups at risk, and do something? Problem is, there are no identified risk groups. (Again pardon my sarcasm) Sure, the psych*-doctors will tell you it is crazy women who are at risk, but that is not reality – everybody is "at risk".
Did I miss some school of thought here? Oh, maybe the mainstream nutritional disciples will scare us of cholesterol, or saturated fat, or whatever they think is the current bogey man. Problem is, these things aren't the cause either.
So you need some preformed notions about ME/CFS to even consider "prevention". And the problem is that none of those preformed notions about ME/CFS are in any way backed up by robust studies.
It is noble to think about preventing ME/CFS, but unless we know more about the cause(s), any talk about "prevention" is pure fantasy, a waste of resources, and potentially quite harmful to the patient.
Try to find out affected pathways, try to find out cause(s) – and demand loud and clear that any prevention is based on clearly identified pathways and causes. I am afraid that any result of such a conference will be: "Doctors need to teach crazy women how to avoid tormenting their doctors with their problems." They might formulate it with more psych*-medical jargon, so it doesn't sound so offensive.
The CFIDS needs to be highly critical of this – otherwise this could have catastrophic effects on the people with ME/CFS.
Friday, April 11, 2014
I posted a comment on the CFIDS website regarding "Pathways to Prevention for ME/CFS":
5-AZA A. Melvin Ramsay Acne Advocacy Alan Light Alternative medicine is an untested danger Ampligen Andrew Wakefield Anecdote Anthony Komaroff Antibiotics Antibodies Anxiety Aphthous Ulcers Apnea Asthma Autism Autoimmune Disease Behçet’s Ben Katz Bertrand Russell Biology Blood sugar Bruce Carruthers Caffeine Calcium Cancer Capitalism Cardiology Carmen Scheibenbogen CBT/GET CDC Celiac Disease Cereal Grains CFIDS Chagas Charité Charles Lapp Christopher Snell Chronix Clinician Coconut Milk Cognition Common Sense and Confirmation Bias Conversion Disorder Coxiella Burnetii Coxsackie Criteria Crohn's Cushing's Syndrome Cytokine Daniel Peterson Darwinism David Bell Depression Diabetes Diagnostic Differential Disease Diseases of Affluence DNA DNA Sequencing Dog DSM5 EBV EEG Eggs Elaine DeFreitas Elimination Diet Enterovirus Epstein-Barr ERV Etiology Evolution Exercise Challenge Faecal Transplant Fame and Fraud and Medical Science Fatigue Fatty Acids Fibromyalgia Francis Ruscetti Fructose Gene Expression Genetics Giardia Gordon Broderick Gulf War Illness Gut Microbiome Harvey Alter Health Care System Hemispherx Hemolytic Uremic Syndrome Herpesviridae High Blood Pressure Historic Outbreaks HIV HPV Hyperlipid Ian Hickie Ian Lipkin Immune System Infection Intermittent Fasting It's the environment stupid Jacob Teitelbaum Jamie Deckoff-Jones Jo Nijs John Chia John Coffin John Maddox José Montoya Judy Mikovits Karl Popper Kathleen Light Kenny De Meirleir Lactose Lamb Laszlo Mechtler LCMV Lecture Leonard Jason Leukemia Life Liver Loren Cordain Low Carb Low-Dose Naltrexone (LDN) Luc Montagnier Lucinda Bateman Ludicrous Notions Lumpers and Splitters Lyme Mady Hornig Mark Hasslett Martin Lerner Mary Schweitzer MCS ME/CFS Medical Industry Medicine is not based on anecdotes Michael Maes Migraine Milk and Dairy Mitochondria MMR Money and Fame and Fraud MRI Multiple Chemical Sensitivity Multiple Sclerosis Mutton My Symptoms n-1 Nancy Klimas Narcolepsy Neurodermitis Neuroscience NK-Cell Nocebo NSAID Nutrition Obesity On Nutrition Pain Paleo Parathyroid Pathogen Paul Cheney PCR Pharmaceutical Industry Picornavirus Placebo Polio Post Exertional Malaise POTS/OI/NMH PTSD PUFA Q Fever Quote Rare Disease Research Retrovirus Rheumatoid Arthritis Rituximab RNA Robert Gallo Robert Lustig Robert Silverman Robert Suhadolnik Rosario Trifiletti Sarah Myhill Sarcasm Science Sequencing Seth Roberts Shrinks vs. Medicine Shyh-Ching Lo Simon Wessely Sinusitis Sjögren's Somnolence Sonya Marshall-Gradisnik Speculation Stanislaw Burzynski Statins Stefan Duschek Study Sucrose Sugar Supplements Symptoms T1DM T2DM There is no such thing as Chronic Lyme There is no such thing as HGRV Thyroid Tinitus To Do Toni Bernhard Tourette's Treatment Tuberculosis Vaccine Video Vincent Lombardi Vincent Racaniello Virus Vitamin B Vitamin D VP62 When Evidence Based Medicine Isn't Whooping Cough Wolfgang Lutz WPI XMRV You fail science forever