New York Times: New Recognition for Chronic Fatigue

There is a world of difference between being housebound and bedbound, again my knowledge was incomplete, I assumed the "25%" was bed bound, at least as bad as I was, back in the day, and didn't realise it included housebound. Unfortunately, most of the time, that would put me in the dreaded "25%" club, currently.

TBH if it includes housebound I'm surprised the figure is that low, as my impression is there are lots of people worse off than I am.

 

I was very pleased with the article until I read this advice:

Which is downright dangerous and irresponsible. I wonder what the recommended way of preventing a ME sufferer from taking a nap is? I can't think of one that wouldn't be cruel and abusive.

Also, the cartoon character at the top has unusually long legs, which I didn't realise was a symptom.

 

Even the 'innocently' uninformed are never going to get it, as far as I can see, until either we have evidence considered far more convincing than what currently exists (in terms of satisfying medical science), or the term 'fatigue' is replaced by 'deathlike paralysis.'

 

I wish they would use the term autonomic dysfunction instead of "fatigue" when describing our symptoms.

 

It looks like she's a regular columnist on health issues, rather than someone who did a big investigative report. By those standards, and despite the flaws, this is a good sign of the narrative turning against the PACE crew.

When so much is unknown, and there's so much misinformation around, it can be really difficult for a journalist hoping to do a quick piece on a health condition to do anything remotely okay on CFS, and we've seen how terrible some have been. If you think of how much patients suffering from the condition who've spent years looking at the evidence can disagree on things, we probably need to give quite a bit of leeway to journalists for some of the issues around CFS. This seems alright-ish, and probably better than nothing?

Having said that, here's another bit to be critical of:

Is there any evidence of benefit there? There's no way I'd want to try something like that without decent evidence on efficacy/side-effects.

 

i think she is a major health columnist/author, which is why it is disturbing.

i think we should raise our expectations of journalists and make sure they rise to them. this is not a topic where is is ok to skim the cdc site and a few web pieces and then offer bland exculpatory vagueness.

the writer has a position of authority, in the sense that people take it as gospel.

===

also raise expectations of newspapers and give them clear rules to follow. why is the *newspaper of record* in the us -- which ran tuller and rehmeyer -- still conflating cf and cfs?

they have in-house copy-editing manuals. maybe we should be contacting chicago and ap also.

and i hardly need to mention it but why is there a huge image of a tired chick who needs to turn on the flamenco, make her whole foods ravioli, and uncork a white?

my opinion is that we need to clearly but politely tell nyt and the writer what is and is not acceptable because in practice nobody will do that for us.

 

The activity on forums like this one suggests that most patients who are posting much are more toward the housebound end of the spectrum than the able-to-work end of the spectrum. When people are working, most of their online activity comes in the evening or on the weekends. We have the opposite pattern, with most activity during the week, then a consistent lull during the weekend, while many people who are active here during the week are spending time with family & friends instead.

So forum activity probably doesn't provide a representative sample. Though good studies into severity prevelance would be nice. I don't know if that could happen in the UK, where many "researchers" would exclude severe patients due to having neurological symptoms and similar

One small study claimed a cognitive benefit from Ritalin, then tried to cover up the deterioration shown in physical and emotional SF36 subscales. The rest of the methodology was pretty crappy too, from what I recall. Some discussion was at https://www.s4me.info/index.php?thr...-fatigue-syndrome-how-well-do-they-work.1204/

 

Thanks @Graham

 

Or at least 'heavily flu-like' or 'the worst hangover you ever had', as newspaper items on ME used to say back in the 1980s when I got it. AFAIK it was never described as 'fatigue' or 'tiredness' then. Doctors actually accepted it as a physical illness (although some did think it imaginary) in which one couldn't recover from a viral infection for some unknown reason and one's system went haywire. I had moderate-severe ME from 1983 until 1990 when I recovered after medical prescription treatment. No psych treatment, the psych BS hadn't yet arrived on the scene. I returned to a 90% normal life, but soon after that, I heard that the illness got renamed CFS and a group of UK psychiatrists were reframing it as fatigue and/or depression.

Then I had a total relapse in 2005, Googled to look for the latest on ME, expecting it to have been figured out by now and a cure available, and was shocked to see that it was now viewed as psychological and the only treatments were CBT and GET. I couldn't recognise my illness in the symptoms described, and the notion that CBT and GET could possibly be 'treatments' for such serious physical disability was clearly absurd. I'm probably unusual in having been through two separate instances of ME in completely different medical scenarios of how the disease was viewed, with a long gap of being out of the loop between each. I felt like I'd stepped into some Bizarro World.

Hence why I think the article discussed here is good, compared to all the total bollox written about us since the 1990s. I know it would be nice if the article went into grittier and more scientific detail, but we have to bear in mind that this is just a health piece in a lifestyle section of a mainstream newspaper, not a scientific journal. The general public who know nothing about ME except for having been fed for the past 3 decades that we are lazy malingerers, are probably best given info they can absorb easily rather than heavy details that will have them turning the page after a couple of paragraphs.

With the recent spate of reasonable, although not at all perfect, articles on ME appearing in the press over the past few months, we've at least come a long way from 'Got ME? Just get out and exercise, scientists say' and similarly disgusting articles we've been maligned in up until now. With continuing exposure of the bad science/anti-science we've been harmed by thanks to a certain group of self-promoting individuals, the reality of the situation is emerging and hopefully more accurate stuff in the media will follow.

 

@EzzieD Your experience sounds a lot like mine.

I'm in Canada and became ill in 1991 from a sudden viral onset and several vaccinations soon after. After 9 months (without treatment) I recovered 90% and was able to return to work, but only to become disabled one month later.

My GP sent me to several specialists for all sorts of testing. I was taken seriously back then. There was only one doctor, an internist, who told me that he studied "CFS" for 10 years but no longer believed that the illness lasts for decades. I thought, "ok, that makes sense". What did I know? The weird thing back then was that I down played my illness and figured I would eventually recover.

Fatigue, tiredness, stressed etc were never mentioned or written on my medical reports- never once.

I was fortunate to see an M.E doctor in 1992 who helped me get disability. I was diagnosed with "atypical M.E", my diagnosis was sent to my GP and she believed I was disabled. Never once was it suggested that my illness was psychological.

I slowly improved for the next 6-7 years without treatment, and like you, had a terrible relapse in 2000. This is when the autonomic symptoms began and now I'm even more disabled.

In 2001 a Virologist ran some immune and DNA/RNA tests for viruses, my CD4,CD8 etc were all below normal range but nothing else was abnormal. He recommended CBT. I'd never heard of it so went online to read about it. Yikes, now they're telling me I fit (bio)psychosocial model or need to learn how to cope? They knew nothing about what I went through. I was stunned.

Fast forward to present, my GP asks how my 'chronic fatigue' is doing when I come in for my yearly physical. Yes, the same GP who took me seriously in 1991 now seems to think I'm 'fatigued'. I'm totally disabled!

Anyways, that's the short version of my experience

We have gone backwards in Canada and I totally agree with you on Bizarro World.

 

Limiting naps to 30 minutes a day? Where did they scrounge that scrap of misinfo from?

If I could only manage *to* nap during the day, I'd be delighted no matter how long or short it were.
I cannot manage to sleep during the day no matter how utterly exhausted I am, unless I am having a viral flare, in which case limiting the body's wise imperative is a really stupid idea.

 

Try coffee, a cup of weak coffee will knock me out within a few minutes, for upto an hour or so, when I'm not at my best.
It's only in the last year or so I've managed to stay awake long enough to finish the cup

Of course it's not the best quality sleep, and things can be a bit peculiar for a while after I wake up

Not really recommending it, as anything other than a diagnostic, but if a "nap" is what's desired it works, at least for me.

I hate naps.

 

I'm so sorry you experienced a similar backwards-moving scenario to what I did. And I'm sure there are tons more folks who have experienced the same issues. It is mindboggling how all ME-related medical knowledge regressed after the 1980s.

Well, we have the two clowns who wrote the two letters in this Tweet to thank for engineering that state of affairs:
https://twitter.com/user/status/934692060107558912


It's so weird how your own GP changed from understanding that you had a real, disabling physical illness, to thinking you're just 'fatigued'. It doesn't make any sense, but neither does so much of the nonsense that comes with having this illness.

Yes, it is truly insulting when doctors or therapists who really show no understanding of ME, tell us we 'need to learn how to cope' with or 'manage' the illness, when we've already long since figured it out ourselves (pacing). We get no credit for having any intelligence or ability to think for ourselves; they assume we're all helpless ninnies. Quite the opposite - we're very tough and resilient! (As much as the illness allows us to be.)

 

After reading this this thread I though this would be a poor article but it is quite good.

There are some really valid lines such as :

I think we can be far too critical here sometimes. No article will ever be perfect.

A lot of the dubious stuff in the article is actually from CDC.

 

Hear, hear.

 

It's worth discussing where we think there are problems with an article, but I agree that it's also wise to remember that nothing will be perfect, and that we should be able to take some satisfaction from coverage that at least seems to be moving in the right direction.

 

Yeah, it only makes sense if accepting the premise that patients are causing their symptoms ("fatigue") with inappropriate behavior.

 

This is not the fault of the article, which was simply citing what the CDC apparently recommends ("When embarking on treatment, the C.D.C. recommends ..."):


https://www.cdc.gov/me-cfs/treatment/index.html

The CDC seems to make a glaring oversight by listing "Some common tips for good sleep are:".

Common tips for sleeping?! For PwME! There is nothing the least bit commonplace about the sleep problems encountered by PwME, so suggesting common tips is ridiculous; some make sense, but not all. That is a seriously flawed bit of advice by the CDC.

So the article writer cannot be expected to spot that the CDC has messed up.

Edit: Are there any ME-specific recommendations anywhere for better sleep?

 

Not sure I agree with that. It's not as if there is a shortage of ME sufferers or patient organisations to ask what they think. Maybe my expectations are too high, but if you're having an article published in the New York Times it would be nice to scratch beneath the surface and do a bit of research. The proof of the pudding is that the author has repeated / validated some horrendously harmful advice, so they must have done something wrong. Not being paid to think isn't much of an excuse, the information is out there and sufferers and their organisations have been screaming it for decades. All the author had to do was listen / ask a few questions / dig beneath the surface.