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My ME/CFS diagnosis was delayed for years because the disease criteria my HMO used required pain, which I don't have (just episodic headaches). The IOM criteria don't require pain, and that's when I finally got diagnosed (2015).

Pulling from the report: Some of the finer details about unrefreshing sleep in ME/CFS, including links to studies, can be found in the Sleep Related Symptoms section of the IOM/NAM report at https://www.ncbi.nlm.nih.gov/books/NBK284902/#sec_089

The page still says "New content coming end of 2017." If so, they will have to publish it over the weekend. :rofl:

I'll write up a review of my experiences in about a week. Mostly positive so far.

Where is the CDC recommendation for rest and pacing? Isn't that what children need to have any hope of recovery? ETA: "limiting physical activity" is along those lines, but I feel it needs to be emphasized more that substantial rest is needed and to avoid the push/crash cycle.

Another article with a short mention of ADHD drugs for "Chronic Fatigue Syndrome". Since the mentioned "observational case study" isn't listed in the references, I assume it was never published. Sounds pretty wishy-washy to me.

It's worth mentioning the CDC's new caution on antidepressants for ME/CFS. In my personal experience, antidepressants are what many overworked doctors "go to" when they can't quickly figure out what is wrong with the patient. There is little chance that even an excellent doctor can properly...

On a related note, if you had childhood or teen onset, another Dr. Bell article, ME/CFS In Children, is worth a read as well. Dr. Bell describes many symptoms I've never read or heard about anywhere else: such as a mono-like viral infection, facial flushing, lymph node pain, headache, abdominal...

You have an excellent point. Dr. Bell's assumption that the progression of adolescent onset ME/CFS is similar to adult onset may not be valid. (here I'm assuming you were adult onset... please correct me if I'm mistaken) As an adolescent onset, I do recognize what Dr. Bell is talking about...

I've read this article many times. In particular, the prognosis for long term teen onset patients (like myself). One more thing I would add is that in the past I've rated my health as "good" because I've been told I was healthy by my doctor. As blood tests etc were all normal, I was told...

One part of the video I found disheartening was Dr. Holladay's discussion of the permanent damage of ME/CFS. Although the cognitive damage is quite apparent to me after decades of illness and shows up vividly in neurocognitive testing, one always hopes that treatment can one day reverse most of...

I didn't have the brain cells to watch the entire video, but I did listen to it. Found the part about viruses fascinating. Particularly the description of enteroviruses spreading to the heart (myocarditis) and brain. This is what I strongly suspect caused my onset.

Dr. Davis around the 12 minute mark says, "some of the biochemistry going on looks a little bit like diabetes". Does anyone know if Dr. Davis referring to Type 1 or Type 2 diabetes? T-cell abnormalities have been implicated in both types of diabetes. Having a parent with Type 1 diabetes and a...

I haven't decided whether to report Crawley's TEDx video. I'm going to sleep on it. But as a YouTube subscriber, it is my right to report videos I think violate the guidelines.

@Esther12 I see your point. But I find much of what Crawley says dangerously close to the line of hate speech against a disabled group. Also, how can YouTube/Google get to the truth unless we tell them?

Would we have a case claiming "Hateful or abusive content" against patients? Skip TEDx and complain straight to YouTube/Google.

Agreed. However, doctors need to be trained on how to diagnose ME/CFS for it to do any good. These guidelines do little for the undiagnosed ME/CFS patient misdiagnosed with idiopathic fatigue and ADD. Not to mention that throwing stimulants at such a patient might cause side effects that make...

Is it always? The SEID (Institute of Medicine/National Academy of Medicine) diagnostic criteria emphasize functional impairment over fatigue.

Here's what the CDC currently says (spacing added for readability): My personal experience with prescription Ritalin/Adderall/Vyvanse supports this: stimulants provide a short term boost in functioning, while worsening the push/crash cycle. Vyvanse has the fewest side effects for me, and I...

The Synergy Trial at Stanford "evaluated the safety and efficacy of methylphenidate (generic Ritalin), combined with a mitochondrial support nutrient formula over 12 weeks". "The difference between the two groups did not achieve statistical significance"...