New York Times: New Recognition for Chronic Fatigue

Kalliope

Kalliope

Senior Member (Voting Rights)
Great article today in NYT on ME. The content is updated and informative (so I've decided to ignore that the headline is Chronic Fatigue instead of Chronic Fatigue Syndrome) :)

New Recognition for Chronic Fatigue by Jane E. Brody

- Having recently endured more than a month of post-concussion fatigue, I can’t imagine how people with so-called chronic fatigue syndrome navigate through life with disabling fatigue that seemingly knows no end

- For patients struggling to get recognition that they are suffering from a serious physiological illness with real symptoms, the goal remains to have doctors take the problem seriously and prescribe an evidence-based approach to treatment that offers hope for relief.

- The longstanding advice to “exercise your way out of it” is now recognized as not only ineffective but counterproductive.

- There is currently no known cure for ME/CFS and patients should be wary of any therapy that claims otherwise.
 
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I do wish people would stop calling it 'chronic fatigue' which is an entirely different condition from 'chronic fatigue syndrome'; the misnomer just causes confusion and perpetuates misinformation. But that said, yes, it is an excellent article! So good to see some truthful stuff about the illness making it into the mainstream media at long last instead of all the usual crap about sufferers just feeling a bit tired. Kudos to the author.
 
I wish they would stop simplifying it down to statements like this.....

After years of treating the syndrome as a psychological disorder, leading health organizations now recognize that it is a serious, long-term illness possibly caused by a disruption in how the immune system responds to infection or stress.
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....it makes it sound like a bit of sleep and some relaxation therapy will cure it. Cue Esther Crawley....
 
..." even the mildest activity, like brushing your teeth, can lead to a debilitating fatigue, the core symptom of the disease."

I don't find this article particularly helpful. It consists of most of the same generalities that have been applied for decades, which make sense for a 'subjective' condition that involves 'self-report' and says almost nothing about objectively measurable biological abnormalities. She's trying to find a way to say 'this is real' without mentioning anything as crucial to the discussion as consistently remarkable results from repeat exercise testing. The self-help aspect of approaching symptom treatment is basically insulting. I mean, all this stuff applies to chronic fatigue perfectly. Now they're even more specific about applying them towards ME.

When I read stuff like this I tend to speculate on what people who don't believe the reality of the illness would tend to think, as 1) they remain a majority, especially in medical science, and 2) they are the people whose minds need to change if we ever consider societal acceptance that this disease is what Melvin Ramsay said it was to be an important goal. Nevermind that it reads as though she was pulling her own teeth to make something readable from sources like Mayo Clinic or CDC fact sheets; I just don't see anything here that will change those minds.
 
I concur with @large donner , @Three Chord Monty and @Webdog . Although not a horrible article, it left me wanting more. At times I suspected the writer actually was talking about "chronic fatigue" as an amorphous state of health, as opposed to ME. There were too many references to incapacitating, or debilitating, or disabling fatigue as being the "core symptom". PEM (post-exertional symptom exacerbation) was described in general terms, instead of being clearly identified as the symptom that differentiates ME from other illnesses.

I took particular exception to the statement that it is "understandably difficult for doctors to appreciate that a disorder lacking obvious physical abnormalities could have a physical basis" and that patients "are likely to be depressed and anxious". Those messages are what will stick in many readers' minds. Instead, why didn't the writer mention the physical abnormalities that have been found?

And if the goal remains to have doctors "prescribe an evidence-based approach to treatment", what exactly is that treatment? The article highlighted a typical sleep hygiene protocol. This implies, wrongly, that our illness can be improved with simple lifestyle interventions designed for healthy others. In my case, establishing a regular sleep schedule and limiting naps resulted in two of the worst ME crashes I've experienced in nearly 30 years. Similarly, implying that over-the-counter pain remedies may be sufficiently helpful downplays the pain many ME patients experience.

I've never liked calling our cognitive dysfunction "brain fog". However, the the reference to "foggy" sounds even more wishy-washy.
If ME patients "with memory or concentration difficulties might benefit from drugs used to treat attention-deficit/hyperactivity disorder", why isn't this common knowledge? Regardless, what about our medication sensitivities? As for the suggestion of relying on organizers and calendars to keep track of important matters, aren't many of us are so ill we have few important matters to keep track of?

Further, why not talk about autonomic issues with proper diagnostic names (POTS, NMH), rather than saying "some patients feel lightheaded, dizzy, weak or faint". Don't many people feel this way from time to time?

I think a good indication of how successful an article will be in changing the narrative about ME is the Comments section. Although there are a few good ones, most indicate a "fail". Respondents talk about the need to break the cycle of fatigue and depression and that insistence on finding a physical trigger interferes with getting psychological help. "Chronic fatigue" is chronic Lyme, or Chiari malformation, or caused by a stuffy nose at night, or adrenal fatigue, or sugar, or world anxiety, or processed food. The solutions . . . nose drops or Breathe Right strips, warm salt baths, exercise, positive thinking, and mindfulness.

I'll give the final word to "Ef" -- that chronic fatigue syndrome is one of several "medical ailments that plague neurotic, bored, lonely and angry people". So there you have it.
 
Well said. I just keep thinking that if I was of the mindset that this is not a _____ illness--and I think we all know too many people who think that, so it's not exactly random speculation--someone who thinks that way doesn't find anything in this article that will affect their own biases. And that goes especially for medical professionals.
 
EzzieD said:
I do wish people would stop calling it 'chronic fatigue' which is an entirely different condition from 'chronic fatigue syndrome'; the misnomer just causes confusion and perpetuates misinformation. But that said, yes, it is an excellent article! So good to see some truthful stuff about the illness making it into the mainstream media at long last instead of all the usual crap about sufferers just feeling a bit tired. Kudos to the author.
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I read a while back that apparently the title is chosen separately, by someone other than the author, who gets little say in the matter I believe. No doubt some editor or other thought it made a snappier title without the "syndrome" bit :rolleyes:.
 
What @MsUnderstood said!

If I wasn't so very 'fatigued' and 'foggy' I might elaborate (heavy sarcasm). OK, since I'm posting I'll say this...25% of us are too 'fatigued' to go grocery shopping, attend school events or even prepare a meal (such as the examples provided in the article) any time soon. This is a large minority of patients living in such an extreme state of disease that 'a retreat to bed' is the permanent reality. I know this lady was doing her best to help but if i were a casual reader with no knowledge of the disease, I'm not sure how much better off i would be from reading this. It's trying to get across some important messages and information but i feel very despondent that i should be grateful for tidbits only marginally better albeit sincere than a fully fledged BPS propaganda effort.
 
Chezboo said:
What @MsUnderstood said!

If I wasn't so very 'fatigued' and 'foggy' I might elaborate (heavy sarcasm). OK, since I'm posting I'll say this...25% of us are too 'fatigued' to go grocery shopping, attend school events or even prepare a meal (such as the examples provided in the article) any time soon. This is a large minority of patients living in such an extreme state of disease that 'a retreat to bed' is the permanent reality. I know this lady was doing her best to help but if i were a casual reader with no knowledge of the disease, I'm not sure how much better off i would be from reading this. It's trying to get across some important messages and information but i feel very despondent that i should be grateful for tidbits only marginally better albeit sincere than a fully fledged BPS propaganda effort.
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Sorry but I disagree. The strong message the innocently uninformed will get is that they have been misinformed all these years, and PwME really do have a genuine illness. They are far too ill informed to pick up on the fine detail you highlight here, it is the broad brush strokes they will get, and which are done well in the article.
 
Barry said:
Sorry but I disagree. The strong message the innocently uninformed will get is that they have been misinformed all these years, and PwME really do have a genuine illness. They are far too ill informed to pick up on the fine detail you highlight here, it is the broad brush strokes they will get, and which are done well in the article.
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Fair enough but for me it's just another (well meaning) version of the CFS is real after all meme.
Edit: I'll add that I don't think mentioning that 25% are too ill to ever leave bed is 'fine detail'.
 
Chezboo said:
Edit: I'll add that I don't think mentioning that 25% are too ill to ever leave bed is 'fine detail'.
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Based on my understanding, what is often omitted from quotes like "25 percent of ME patients are homebound/housebound or bedbound/bedridden" are the words "at some point in the illness" (not necessarily permanently). For me, telling partial truths about ME only add to the credibility problem. The real story is bad enough.
 
Edit: I'll add that I don't think mentioning that up to 25% are so ill most of their time is spent in bed often for years at a time is 'fine detail'.
 
MsUnderstood said:
Based on my understanding, what is often omitted from quotes like "25 percent of ME patients are homebound/housebound or bedbound/bedridden" are the words "at some point in the illness" (not necessarily permanently). For me, telling partial truths about ME only add to the credibility problem. The real story is bad enough.
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This has never been clear to me, even though I was totally bed bound for months at one point.

I was under the impression that a lot, possibly most, of us go through this stage, some with help (family etc.), some without. I was further under the impression that a percentage, no idea if that's 25% or not or if that's just "marketing", didn't recover enough to not be, at least legally, bedbound.

Are you saying that this is not the case, that if not everyone, almost everyone, eventually comes out of the bedbound stage, as I did?

I perhaps should point out that the only reason I came out of it was because externally things fell apart, the rent wasn't being paid, when the landlords bailiffs broke in I was found, people were contacted and a friend took me in and helped, made sure I was fed etc., without that I probably wouldn't have survived that period (I had lost quite a lot of weight due to the whole not eating because I didn't have any food thing).
 
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My husband fell last winter and got a concussion. It was fascinating to me that so many of his symptoms matched so many of mine, and I think he finally understood many of the issues I've had trouble explaining.

Edited to add: @Wonko What a horrible story. So glad you were finally found ad helped, and that you're improved from that dreadful state!:(
 
MsUnderstood said:
Based on my understanding, what is often omitted from quotes like "25 percent of ME patients are homebound/housebound or bedbound/bedridden" are the words "at some point in the illness" (not necessarily permanently). For me, telling partial truths about ME only add to the credibility problem. The real story is bad enough.
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My understanding is that epidemiology studies into ME/CFS are not where they should be and consequently very little can be said for certain. In my own case, I have never been bedbound but have been mostly housebound for years. My life is very limited yet I consider myself ‘moderate’ even though the ‘official’ description of ‘Severe ME’ seems to be that ‘25 percent of ME patients are homebound/housebound or bedbound/bedridden. Based on that, I could describe myself as having severe ME but I'm not sure I do?

The difference between being able to self care and make meals even if you can’t keep up with housework and can only ‘go outside’ on rare occasions is a world apart from people who are pretty much stuck in bed and have difficulty with personal care etc. This is the difference I have personally used to differentiate between severe and moderate but I realise that is only my personal understanding.

While describing severity I haven’t even touched on the fluctuating nature of the illness. Some improve, some may stay broadly the same with fluctuations, some are relapsing remitting, some get progressively worse. There are no studies that I know of describing this but it’s another consideration.

To my mind, when I described that 25% were mostly bedbound, this was as I understood it but who knows what the actual figure is and how long people stay or stray back into the bedbound/severe category and how many of them there are. It is my personal feeling that the effects of severe ME are so serious that it can never be overestimated and should always be included when broadly describing ME/CFS even if the epidemiology knowledge base is poor as it is at this time.
 
Wonko said:
This has never been clear to me, even though I was totally bed bound for months at one point.

Are you saying that this is not the case, that if not everyone, almost everyone, eventually comes out of the bedbound stage, as I did?
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@Wonko I've never considered the qualifier "at some point in the illness" to mean that everyone, or almost everyone, comes out of the bedbound stage. All I recall is that this is how the situation for the most severely-affected patients was frequently described in the past. Recently, however, the statement has been simplified to merely state that 25 percent are homebound/bedbound. You may be correct that "marketing" the illness is in play. Again, not my "call".

I looked for references, and could only find one which states: "At least one-quarter of individuals with ME/CFS are bedbound or housebound at some point in the illness and most never regain their pre-disease level of functioning."
https://www.nih.gov/mecfs/about-mecfs

Whether my failure to easily find others means that research has proven otherwise, or is an example of how information or misinformation tends to proliferate on the internet, I have no idea.

Like you, I have been housebound, and essentially bedbound, at various times -- the most recent extended period about 4 1/2 years ago. But I didn't start out that severe despite being significantly impaired. And, as long as I respect my limitations and don't listen to ill-informed physicians, I don't expect to be in such a dire situation again.

I'm very glad you were found in time.

ETA: https://www.newyorker.com/tech/elements/chronic-fatigue-syndrome-iom-report

This article states "up to 29 percent". The source appears to be Ellen Clayton, the chair of the I.O.M. committee and a professor at the Center for Biomedical Ethics and Society, at Vanderbilt University.

And here: https://www.melbournebioanalytics.org/media-centre/facts-about-mecfs/

http://solvecfs.org/house-testimony
 
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