Snow Leopard
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It all comes down to chicken vs egg. Over time, with more eyes on the job we can come up with more specific subgrouping.
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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It would be nice to having something shorter as well, for GPs that can be useful in the typical 10 minute appointment. Maybe two pages, so it can fit onto the back and front of a single paper, with just the essential points.
This may be where we have to do the work that our GPs are too busy (lazy? disinterested?) to do themselves. Come in with the full document and a single sheet focusing on the issue you want to deal with that day. Maybe even a highlighter could do the trick.
However, in my experience, that's not likely to work for most GPs. I've tried bringing them the limited information, but then they say the treatment isn't justified by the condition. I tell them that to understand the whole condition, they need to read the entire document, which they claim not to have the time to do. It's a no-win situation until our GPs are self-motivated, or required by superior agencies, to unlearn the misinformation about ME/CFS and get educated about the truth.
This is where the CDC website can come in so very handy. If instead of their misleading, antiquated "toolkit", they would have a new revised up-to-date one, it would make all the difference.
I think that most GPs take the CDC as the medical bible. I know that my GP does and when I first came to him with all my issues, he told me "you either have depression or CFS but it doesn't matter which one because they are both treated the same way - with anti-depressants". This was the start of my downfall.
I don't know what can be done for the CDC to take action but, GPs would take stock if they would update their website to in line with the CCC or ICC and it would mean so much more than handing a sheet of paper of our own to our physician.
This primer is wrong. It incorrectly claims that everyone satisfying the ICC must therefore have ME. They even explicitly include nonviral causes of the complaints, which is at odds with the WHO classification.
MS is not lumped together with other diseases like Lyme.The cause of MS is also not yet established and still it is MS.
Let's say you break your neck whether by falling of a bike because of a stone on the road or by being hit by a car while biking, you still have a broken neck.
If we agree that M.E. is myalgic encephalomyelitis, then the causes can probably be multiple. Viral, bacterial, ...
This is a really good document. In part though I am concerned it might be too good - too much information for a busy doctor who doesn't want to deal with anything new.
I think the ICC is intended to replace the CCC with the intention to leave behind the CFS label for those who meet this new criteria. Sorry that's not worded very well, can't think how to express it any better though.
And it is intended for doctors I believe
Isn't the CCC intended to be for clinical use, and the ICC for research? If that's the case, then the ICC primer does seem good for researchers.
Misperceptions have arisen because the name "CFS" and its hypbrids ME/CFS, CFS/ME and CFS/CF have been used for widely diverse conditions
Remove patients who satifsy the ICC from the broader category of CFS
The rationale for the development of the ICC was to utilize current research knowledge to indentify objective, measurable and reproducible abnormalities that directly reflect the interactive, regulatory components of the underlying pathophysiology of ME.
The criteria anre designed for both clinical and research settings
Problem
Overly inclusive criteria have created misperceptions, fostered cynicism and have had a major negative impact on how Me is viewed by the medical community, patients, their families, as well as the general public
Solution
The ICP (international consensus primer) was written to provide clinicians with a one-stop, user-friendly reference for ME.
The ICP specifically targets primary care clinicians as well as specialists in internal medicine
When the ICC was published, I conveyed Nielk's sentiments to Dr. Carruthers. As soon as I'm stronger, I plan to pass on your note of thanks as well. Dr. Carruthers' commitment to patient welfare has been truly remarkable over the years. His medical practice recently closed.Thank you, thank you.. hopefully this document will help me to get my CFS specialist to start giving me the treatment Im needing (after trialing so many other things to try to raise my blood volume enough).
Thank you for all that have worked on this document. Im feeling so grateful.
When the ICC was published, I conveyed Nielk's sentiments to Dr. Carruthers. As soon as I'm stronger, I plan to pass on your note of thanks as well. Dr. Carruthers' commitment to patient welfare has been truly remarkable over the years. His medical practice recently closed.
MS is not lumped together with other diseases like Lyme.
The importance of distinguishing one disease from others is that they all require different treatments. If you break your neck, doctors will first establish how it was broken before they will try and heal you, too.
This may be where we have to do the work that our GPs are too busy (lazy? disinterested?) to do themselves. Come in with the full document and a single sheet focusing on the issue you want to deal with that day. Maybe even a highlighter could do the trick.
...my ME "specialist" was being a turd.