MSN article: "CDC Recognition of Chronic Fatigue Syndrome Paves the Way for a Cure"

[Andy]

Some good, some bad.

Until recently, chronic fatigue was widely known as a hyperbolic description of the exhaustion that accompanies everyday life, or an indication of an undiagnosed illness—rather than an illness itself. Sufferers of chronic fatigue were prescribed more sleep, more exercise, more nutritious meals, or more therapy. For those leading healthy lifestyles with no feasible cure in sight, the disorder’s constant misappropriation was extremely frustrating. Now, after decades of categorizing chronic fatigue as a psychological disorder, major health organizations are seeing it in a new light. Otherwise known to doctors as myalgic encephalomyelitis (ME/CFS), chronic fatigue is being addressed as a serious illness stemming from the autoimmune system’s reaction to infection or stress.

The NIH estimates that between 1-2 million Americans are currently living with ME/CFS, thanks to a wide range of possible diagnoses that reflect both the lack of research on chronic fatigue and the difficulty in properly diagnosing it. Chronic fatigue shares countless signs and symptoms with disorders such as insomnia, sleep apnea, diabetes, anemia, depression, anxiety, bipolar disorder, schizophrenia, and more, making it hard to identify in both adults and children.

Observer spoke to Dr. Nathan Holladay, MD, Ph.D., about the importance of medical recognition for ME/CFS and ways he helps his patients cope with the debilitating illness. Dr. Holladay specializes in ME/CFS at his private practice in Salt Lake City, Utah, where he treats the disorder as a physiological issue that can result from problems within the autoimmune, endocrine, and nervous systems as well as sleep issues.

https://www.msn.com/en-us/news/medi...ic-fatigue-syndrome-paves-the-way-for-a-cure/

 

[Mij]

Here's a good video from Dr. Nathan Holladay

 

[BurnA]

Despite the fact the article quotes Holloday "at the very least call it chronic fatigue syndrome", somehow the author can't even do that.

 

[EzzieD]

For some reason, I can't read it on the MSN website - I just get thrown to the site's front page instead of the article (could be because I have so many script-blockers and suchlike), but the article seems to have been taken from the New York Observer, in case anyone else has problems seeing it on MSN: http://observer.com/2017/12/cdc-recognition-of-chronic-fatigue-syndrome-paves-the-way-for-a-cure/

Weirdly uneven article - the author starts off continually calling it 'chronic fatigue', and makes the extraordinary claim that it "shares symptoms with bipolar disorder and schizophrenia" - huh? Then the paragraphs with Dr Holladay are more sensible and accurate, but then it goes back to nonsense again, especially this bit:

ME/CFS is a disorder that still baffles the medical community due to its tendency to contradict itself; it is a physiological illness that displays little to no physical symptoms.

Whaaaat?? Little to no physical symptoms?? What rock has that author been living under? Yikes.

 

[Allele]

Geepers. It's like Inspirobot wrote it.

 

[EzzieD]

I truly wonder how such a completely erroneous (except for the bit with Dr Holladay) article was allowed to be uncritically published? Claiming that ME shares symptoms with bipolar and schizophrenia and that it displays little to no physical symptoms is so jaw-droppingly wrong that it's possibly the wrongest, and strangest, reporting of ME I've seen. The author seems to know nothing at all about the illness and it's like she was just making stuff up as she went along.

 

[Allele]

Who with more than one braincell volunteers to write a letter to MSN/Observer/the author?

 

[EzzieD]

I myself unfortunately don't have the necessary brain cells, but I've finally had a chance to watch the above-mentioned video and it's very good, Dr Holladay does seem to know his stuff re ME. I hadn't heard of him before and enjoyed his talk. It's just a pity the author of the article didn't watch it; she would have learned about the biology of ME and how it's not a 'baffling condition that contradicts itself by showing little to no physical symptoms' (LOL one of the silliest things I've ever read about this illness)!

 

[Webdog]

I myself unfortunately don't have the necessary brain cells, but I've finally had a chance to watch the above-mentioned video and it's very good, Dr Holladay does seem to know his stuff re ME. I hadn't heard of him before and enjoyed his talk. It's just a pity the author of the article didn't watch it; she would have learned about the biology of ME and how it's not a 'baffling condition that contradicts itself by showing little to no physical symptoms' (LOL one of the silliest things I've ever read about this illness)!

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.

 

[Webdog]

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 the damage.

Holladay pretty much crushes that hope.

It's about as disheartening as reading "Prognosis of ME/CFS" by David S. Bell, MD, which destroys the myth that longterm sufferers with adolescent onset can recover.

 

[MeSci]

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 the damage.

Holladay pretty much crushes that hope.

It's about as disheartening as reading "Prognosis of ME/CFS" by David S. Bell, MD, which destroys the myth that longterm sufferers with adolescent onset can recover.

I can't remember what he said, but is it possible that he is/was wrong? I recall brief periods when I felt almost normal, with no permanent damage, but I can't remember the last one.

 

[Inara]

Well, @Webdog, I didn't know that and this crashed some of my hope, too I am still so young...

Ahhh, and here comes new hope, thank you @MeSci

 

[Mij]

@Webdog don't lose hope. We are on the right track (finally).

My citric acid cycle on my OA test was very low and Dr. Davis gives me hope.

https://www.paloaltoonline.com/news...hlights-new-chronic-fatigue-syndrome-research

My bolding:

"Davis and his team introduced electrical impulses to both cells and blood serum (a protein-rich liquid that separates out when blood coagulates), taken from both ME/CFS patients and healthy controls. The patients' serum had a very different response from that of healthy subjects. The cells themselves did not seem to have any defects, only the serum that came from the cells. All of the samples from the ME/CFS patients behaved the same way and all of the healthy controls did not deviate from their cell reactions, he said."

"But Davis and his team have been testing compounds that seem to switch on the shut-down citric acid cycle. Two substances -- pyruvate and ATP -- have been capable of making the cells function properly again. But much more testing must be done, he said."

and this:

"Scientists have some theories about why the metabolic sequence in a ME/CFS patient might turn off. Robert Naviaux, a University of California, San Diego expert in mitochondrial DNA and metabolism who will also speak at the community symposium, theorizes that the switch-off mechanism could be a "danger response." ME/CFS is a metabolic state designed to protect the body during a viral infection, for example, but for some reason it doesn't get turned back on after after the infection has gone".

 

[Trish]

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 the damage.

Holladay pretty much crushes that hope.

I just managed to finish watching the video. Dr Halliday is young doctor who has specialised in infectious diseases, and is fairly new to the ME/CFS field. He has been trained by the Bateman Horne Centre, who, as far as I can tell are very good.

His talk takes us through an overview of what he has learned so far. I found him an engaging person keen to do the best for his patients, listening carefully, for example to determine what kind of pain they have in order to do the best treatment. It is great to see keen young doctors choosing to specialise in ME.

What he said mainly fitted closely with what I have managed to pick up over the last couple of years. There were a couple of places where I wondered whether he had it quite clear.

Firstly, the CPET - he talked about reaching the anaerobic threshold at a lower level than healthy patients, and this being related to problems with energy production, but he seems to have completely missed the key point about the 2 day CPET showing abnormality in recovery, and the relation to PEM. In fact I don't remember him mentioning PEM at all.

The second thing I noticed was that he was very vague about the neurological findings - partly limited time, partly not his specialism, and partly there is limited information available. What concerned me was that he speculated about lasting damage to the brain without suggesting there was any evidence to back this up.

The only things about this I remember in my limited reading suggested changes seen were reversible. I hasten to add I'm not a doctor or a brain scientist, so I have no idea whether he was right or wrong.