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A series of posts have been moved here from the Concerns about CCI thread. Just to clarify - these are all the people you are saying are fringe and that "no reasonably intelligent well trained physicians takes them seriously"? ICC authors B. M. Carruthers M. I. van de Sande K. L. De...

What I'm trying to say is the immune dysfunction IS necessary to the process for diagnosis of ME. I absolutely agree that it is NOT necessary for someone to be diagnosed with ME/CFS (SEID). Careful stratification of patients who do or do not fit a criteria matters to patients getting proper...

And yet this is what the experts included in the ICC: "Myalgic encephalomyelitis (ME), also referred to in the literature as chronic fatigue syndrome (CFS), is a complex disease involving profound dysregulation of the central nervous system (CNS) [1-3] and immune system [4-8], dysfunction of...

A bit more clarification about the patient experience will hopefully clarify for you why it is HIGHLY relevant that the neurological, immunological and cardiac issues are included in a criteria our doctors use when they are evaluating us in preparation for being our medical care providers. 1...

Maybe I'm not understanding what you are saying. So I will reclarify. In the US - we go to a doctor.... they are required to use a diagnostic code (aka diagnose us) in order to get paid... (i.e. - the diagnosis dictates what they are allowed to do - if they do things outside of those parameters...

This may be a case of what happens in the UK that absolutely does not equate to what happens in the US. Diagnostic criteria for ME is G93.3 In a recent interaction with my doctor to order NK Cell function test, I called my insurance company to verify the test was covered by insurance. My...

I agree this isn't medical education but I think it is important that patients have a basic grasp of the criteria they are attempting to demystify. I am also reading between the lines that this is solidifying MEAction's push for the IOM as the clinical tool instead of the ICC. I agree this is...

Right. Good to understand though that disability under social security relies on actual ability to work and not the diagnosis. Previously the label was CFS and they had information in the SSI ruling that led to the ICC. (https://www.ssa.gov/OP_Home/rulings/di/01/SSR2014-01-di-01.html) "In...

I would argue they have NOT accepted this. The experience of many patients with their work place disability as well as the stance at major medical centers in the US shows we are a long way from ME being recognized as a distinct acquired disabling disease. From the Mayo website: (Dr. Beth...

My personal opinion (based on 30 years of being ill with sudden onset ME) is that the International Consensus Primer is a fairly comprehensive write up on the lived experience of ME. Not only does it describe the experience, it breaks down into sections some of the likely causes of the symptoms...

A unified front about what criteria is best for research into ME should already exist. I think we can all agree that Fukuda (just like Oxford) isn't appropriate for anything that could be seen as an "ME" study. It's labeled a "CFS" study and uses Fukuda. What that means is another study would...

THANK you so much for the transcript! And I agree this was a quality presentation. Science not silence... great message. That first quote indicates to me the world is still expecting the NIH to lead the way. Which is a reminder to the US advocates how important it is we push for proper...

I'm concerned that answering your question is actually stepping into a minefield. So let me approach the answer this way. I will respect that you may not agree with my POV. 1. CFS and ME are not the same disease. 2. While I am aware that there is more than one criteria that uses the label...

Dr. Montoya treatment sheet: Includes information about dangers of exercise, lab testing and antivirals. From the paper: “Imagine that every time you crash, your immune system overreacts as a response…. As a result, the immune system attacks your body’s own cells in the Central Nervous System...

This is an important discussion which exposes a great deal of what I see problematic in the ME community. We need the narratives about ME to accurately reflect the science we now know about the disease. @NeilH - So sorry to hear about your sister and this must be a very difficult time for you...

I haven't compared for accuracy, but it is definitely understandable. I think that's one of the best visuals I've seen to help understand the level of severity. "Severe" understanding truly varies depending on what criteria a person is using. But no matter which criteria is being used, this...

I think you make an excellent point. Any diagnosis must go through a process of elimination. Just fitting a diagnosis is just the first step. One of the biggest challenges we have is that "ME" has become an umbrella term which is unscientific. ME is a distinct patient group which has been...

I hope this will be available for viewing after. The information he shared at the OMF symposium was informative. The information about the microglia explains why some of us see reduction in symptoms using Low Dose Naltrexone. While some react badly to LDN, I have found it to be the only...

I hope you are right. I am in the US and the distinct definition for ME has been excluded repeatedly by our CDC, the rumblings sound like NICE is following suit.

In any disease the description of the disease is the basis for all that takes place. We know the description of ME (as per Ramsay) was corrupted in the mid 1990s and that the CFS narrative of fatigue led to the MUS mess. On here many arguments fall into the same trap of the terminology meaning...