Not at all!
How can you say that "psychiatric disorder", "primary sleep disorder", "nutritional disorder or "pain disorder" are an accurate re-diagnosis? In most cases these would be as undefined as a diagnosis of ME. However the medical support and compassion for these alternatives would indeed be more acceptable to the patient.
I do not agree with the authors conclusion that "These reports provide clear, formal evidence that almost half of patients referred from primary care with a diagnosis of ME/CFS actually have something else wrong with them".
I do agree that the medical workup of a suspected case of ME is generally woefully inadequate and leads to poor or harmful treatment. ~ Posted by: IanH, Nov 11, 2015
Based in the UK, with ME following an acute viral trigger, the approach is to assume that the problem is a secondary bacterial infection, so that broad spectrum antibiotics are used. No attempt to provide medical testing. If this fails, it must be all in the mind, so in go antidepressants, graded exercise and cognitive behaviour therapy. When, as happened to me considerable symptom intensification developed, I was discharged and labelled as 'treatment resistant', with symptoms significant worse than before treatment started with the UK National Health Service.
It was only after I paid all the costs to use 100% private medical care that two chronic Herpes infections were found, and treated, and chronic Neurocardiogenic syncope, hence a loss of blood pressure and blood perfusion control. This also proved that the UK National Health Service provided the worst possible treatment, and it was guaranteed to intensify all my symptoms.
I now refuse to accept any form of UK National Health Service diagnosis and treatment as it is extremely dangerous, and regard the National Health Service as fit for life threatening emergencies only, where arrival unconscious is the only condition, by force, that triggers a genuine effort to make a correct diagnosis. ~ Posted by: AndyTheJaw, Nov 14, 2015
Tried Marshal protocol
I have tried Olmesartan for about two and half years. I believe the drug mainly works by reducing the over activity of sympathetic system. I found for me it was impossible to take 40 mgs four times daily, there were cramps in the muscles, retrosternal pain, gastric acidity and asthma. initially I continued with full dose but then gradually I reduced it to 40mgs twice daily which I managed to take for two years. when I tried to taper it off I found my symptoms that were caused by overactive sympathetic system will get worse. I take 40mgs once a day to keep my sympathetic system under check and therefore reduced symptoms. basically this drug does not work in CFS ~ Posted by: docma1, Nov 14, 2015
I have read about this on several websites and find it extremely difficult to understand how this can happen. It is confusing why a so-called enlightened country should have this attitude when there is so much information on ME is now available. Why is it that this illness being psychiatric prevail?
Karina has suffered greatly through this experience so when she is allowed to return home the damage will be obvious and my guess she will be abandoned and her parents will be left to cope with the consequences.
There must be others in the same position and I weep for them. ~ Posted by: Matariki, Nov 11, 2015
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She is amazing! I moved to Florida in hopes that I can get help at NSU (I am an alumni). I have left messages, but it appears that they have had so many requests, they only have a waiting list at this point. I have suffered for 11 years. I am so excited about the possibility to become her patient!
We need more like her! I'm keeping my fingers crossed in hope that I might be able to have a few good years. ~ Posted by: Queenofsleep, Nov 11, 2015
Excellent analysis thanks
I appreciate the work you have done on this.
It is always the case that behavioural treatment trials have larger cohorts than a drug or other intervention in ill-defined diseases and this is especially so in ME. Part of the problem, as we know, is diagnostics. The recent summary presented here of "misdiagnoses" in ME/CFS (or was it in FM) is a good example of the shambles that exists. It is easy to re-diagnose ME/CFS into something else because it can't be diagnosed in the first place – can it? This bad representation of the illness via "treatment" will continue to exist until we have accepted biomarkers of the illness.
At this stage I still believe that treatments are premature and that includes rituximab. All funds should be going into understanding the disease and identifying it. An illness can NEVER be defined by the treatment applied to it. Amitryptiline is used for painful conditions but that does not mean the pain is caused by depression. Obviously calling amitryp an anti-depressant causes much confusion among even qualified medical practitioners. ~Posted by: IanH, Nov 14, 2015
Re: Myalgic encephalomyelitis, chronic fatigue syndrome: An infectious disease
Zaher Nahle, PhD, MPA, V.P. for Research and Scientific Programs at Solve ME/CFS Initiative, in their recent 2014 Annual Report on page 4 stated that ME/CFS is a devastating NON-COMMUNICABLE disease. If it is non-communicable then it must be non-infectious! So there must be no pathogen. I didn't realize that there was such conclusive research. So what is Ian Lipkin and others looking for? ME/CFS is definitely a research challenge but because no elusive pathogen has been identified as yet does not support abandoning the search. ~Posted by: selvage, Nov 21, 2015
Thank you for this important comment, selvage.
I am sorry I not on this platform as often as I should or want to be, but nevertheless I wanted to reach out to you directly with this info: The area of immunity and inflammation in ME/CFS is a major focus at the organization. I stress that frequently in our publications and discussions with researchers and the community. It is important to emphasize that many non-communicable diseases that are chronic in nature are demonstrably pathogenic in their root causes. For instance, two well-known examples comes to mind right now: 1- HPV (a virus) and cervical cancers; and 2- H. Pylori (a bacteria) and ulcers/stomach cancers (also a Nobel Prize winning discovery on how some non-communicable diseases can in fact be caused by a pathogen, 2005). For an accurate description of our research philosophy, approach, programs and initiatives, kindly visit our site or this link when you can
or email me directly at email@example.com. Available to talk anytime. Congratulations also to Dr. Rosemary Underhill for this important contribution. Finally and on a personal note, Pathogens and Host/gene interaction are core interests of mine (incidentally, my PhD work focused on how DNA tumor viruses trigger cell death and reprogram metabolic patterns) and I am glad to be part of this stimulating discussion. Thanks again! Zaher ~Posted by: znahle, Dec 1, 2015
So I have finally got the answer as to why I have eye pain and the left eye protrude outward.Its worse when I occasionally go out example shopping.Using my eyes more bring on the pain, I have been suffering from cfs for 25 yrs.Ophthalmologist are blissfully unaware. ~ Posted by: marthese, Dec 3, 2015