• 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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Big news piece: Chronic Fatigue Syndrome Patients Push for an Elusive Cure

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
Don't be put off by the title, it's an excellent piece about mecfs and the poor state of research and funding, focusing on Brian Vastag (@viggster) but also mentioning Vanessa Li.

The tragic neglect of Chronic Fatigue Syndrome - The Atlantic

This past July, Brian Vastag, a former science reporter, placed an op-ed with his former employer, the Washington Post. It was an open letter to the National Institutes of Health director Francis Collins, a man Vastag had formerly used as a source on his beat.

“I’ve been felled by the most forlorn of orphan illnesses,” Vastag wrote. “At 43, my productive life may well be over.”
Quite a long piece, but worth the effort.

Thanks to the author, Olga Khazan.
 
Last edited:

duncan

Senior Member
Messages
2,240
No.

You do not get to research and write a long article on ME/CFS and not appreciate the difference between chronic fatigue, a symptom of MANY diseases and disorders, and ME.

To present this gaffe in the title,as a headline...

And the stat she lobs at the readers that stuck with me? The incidence comparison with schizophrenia, where she highlights the fact that it is the "same number". She actually highlights it.

Is there good data in here? Yes. I think there is a compelling story in this article.

First, you need to draw the reader in. Chronic fatigue? That's the hook? How many will just turn to the next article, cuz, ho hum, to one extent or another everyone gets tired, so quit whining?

I appreciate authors who tackle this disease. But get it right, at least in the title. Yes. I insist on that.
 
Last edited:

Sasha

Fine, thank you
Messages
17,863
Location
UK
I've just posted a comment and have asked for the "chronic fatigue" issue to be fixed - I suspect that the journalist fell victim to a copy editor who didn't understand the issue, because the journalist clearly gets it.

There's a bit of a troll-nest on there, which is disappointing, but their posts will sink to the bottom if we just IGNORE THEM and make our own posts with points that we want to make.

I've posted about the charities that people can donate to, and about the IoM report.

Here are some instructions on how to use an article like this to make productive comments.

I want to emphasise this bit:

  • Do not feed the troll! Don’t engage – just politely direct people to the latest research. Again, cite the IOM and P2P reports. “I get tired too and I just suck it up – you’re all just a lazy bunch of scroungers” should be met with, “It’s important to distinguish between ME and just being chronically tired. ME has many other symptoms than fatigue, including neurological and immune symptoms, and is a serious, disabling multi-system disease. This has been demonstrated in research summarised in the latest report from…” etc. etc. Play it like a rational adult and let the troll look like the stick-poking child that they are. Talk over their heads to your real audience and…
  • Always remember who your intended audience is. It isn’t trolls or people who are incapable of being convinced. We’re talking to patients who might not be aware that our community exists and to the 99% of the general public who will be persuaded by good evidence. We want all of those people on board with us, advocating, educating others and donating to our charities.
Please do make some positive comments and IGNORE THE TROLLS! Don't bait them. This article is about PWME, not trolls - don't let them make it all about them.

This is a great opportunity to reach out to other PWME who will read the article and will get excited about the possibility of joining our community and supporting the research, and to ordinary, compassionate readers who will be appalled by what they've just read.

That's our audience: let's address them.
 

akrasia

Senior Member
Messages
215
If there ever was an article that artfully and effectively undermines its click bait title, this is it.

It takes the standard human interest hook and opens it out into the nature of government health policy making, explaining along the way the grounded, deep unease of patients with using the name Chronic Fatigue Syndrome. Anyone who actually reads the article with an open mind will see why myalgic encephalomyelitis is preferred by the article's protagonist, Brian Vastag, given the seriousness of his condition.

Pieces like this, and Tucker's Washington Post article, mark an important shift from "mystery disease" accompanied by someone's terrible story to the central question of why isn't this being addressed by the NIH and CDC. It also draws attention to its historical corollary why was the disease ignored and neglected and frames it, in Ron Davis's words, as a tragedy.
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
No.

You do not get to research and write a long article on ME/CFS and not appreciate the difference between chronic fatigue, a symptom of MANY diseases and disorders, and ME.

To present this gaffe in the title,as a headline...

And the stat she lobs at the readers that stuck with me? The incidence comparison with schizophrenia, where she highlights the fact that it is the "same number". She actually highlights it.

Is there good data in here? Yes. I think there is a compelling story in this article.

First, you need to draw the reader in. Chronic fatigue? That's the hook? How many will just turn to the next article, cuz, ho hum, to one extent or another everyone gets tired, so quit whining?

I appreciate authors who tackle this disease. But get it right, at least in the title. Yes. I insist on that.

I know and you make good points. Unfortunately this confused idea of 'the patients won't mind if we say CF' also leads to two other condensing oddities I spotted, ironically in an otherwise acceptable article for the public who don't know what 'CFS' is. (Note I said CFS).

The first problem quoted from the article is this:

For the sake of clarity and consistency with the existing medical literature, this article uses “chronic fatigue.” More on this naming controversy later.

Source: http://www.theatlantic.com/health/a...gue-patients-push-for-an-elusive-cure/409534/

Well the medical literature (research) does not mention Chronic Fatigue (except psychiatry), it deals with CFS. Psychiatry denies organic CFS or ME (via Chronic Fatigue), so that's a non starter to suggest that for sake of clarity they need to say 'Chronic Fatigue'. Most peculiar I thought?!

The final error I found was the language of the article is coincidentally copying the NHS CFS website word for word with the following misinformation. :eek:

Frustrated, Vastag told the doctor, “I’m pretty sure I have ME.” (The term most patients, including Vastag, prefer for their disease is “myalgic encephalomyelitis,” or ME.

Source: http://www.theatlantic.com/health/a...gue-patients-push-for-an-elusive-cure/409534/

Correction for the journalist here is a must, although it's an easy honest mistake if you don't know what ME or CFS are in isolation of each other.

Patients don't 'prefer' the term ME if they don't have CFS. Patients are diagnosed with ME
There is also a set of ME criteria, called ME International Consensus Criteria (ME ICC) which is far more stringent than Fukuda CFS and actually rejects the notion of CFS as ME inside it completely.

So ME is not a name patients prefer. It's a neurological disease (WHO - Circa 1969).

Conversely CFS is a CDC fatigue syndrome, that doesn't require a single neurological symptom to be present. The UK NHS mirrors the article's statements on their website, and says that doctors say CFS and patients prefer ME- the inference here is the patients are in denial and doctor knows best, so there is friction between the two (which the UK Department of Health - who runs the NHS - actually caused by creating CFS/ME in the first place). :bang-head:

  • chronic fatigue syndromeoften used and preferred by doctors as there's little evidence of brain and spinal cord inflammation, which the term ME suggests; ME is also thought to be too specific to cover all the symptoms of the condition
  • myalgic encephalomyelitis (ME) preferred by those who feel CFS is not specific enough and doesn't reflect the severity and different types of fatigue, and implies that fatigue is the only symptom (myalgic encephalopathy is sometimes also used)
Source: NHS Choices, Chronic Fatigue Syndrome: http://www.nhs.uk/Conditions/Chronic-fatigue-syndrome/Pages/Introduction.aspx

This is all fine and dandy if you don't actually know they are 2 different conditions. One is based on Myalgic Encephalomyelitis signs (disease signs) one is based on Chronic Fatigue and 4 or more symptoms = CFS. Or in UK: Chronic Fatigue, PEM and 1 or more symptom.

None of these can even begin to match ME in anyway, with SEID getting better. ME patients don't even report fatigue to begin with, they report PAIN, INFECTION, MUSCLE WEAKNESS etc. None of which are required to have CFS.

Other than that, on CFS it was an article the public might read and judge Americans less harshly by, which isn't hard if they believe their sick friends now housebound have a 'CFS' when actually they face a life crippled by autoimmunity or worse and are told they need CBT GET and PACING to manage it.

Thus even going down the road of CF (Chronic Fatigue) was unwise and medically incorrect and not for 'clarity' reasons at all. I must also add it doesn't help people set up organisations like 'The Chronic Fatigue Initiative' does it? And state they won't be looking at retroviruses either. Now that would be a good story to investigate next.

*What are the 85% positive retroviruses that Dr Lipkin won't mention. HERV's?
*Why is Dr Montoya's Cytokine assay paper blocked that demonstrates inflammation?
*Why is Dr Lipkin's work not looking at patients with no inflammation not blocked.
*Do retroviruses cause inflammation? Yes.
*Does ME require inflammation? Yes.
*Do cytokines and chemokines in the blood, suggest brain glial cell activation? Yes.

Imagine a story on that, that isn't a silent response.
 
Last edited:

panckage

Senior Member
Messages
777
Location
Vancouver, BC
Woah this article.........
Vastag struggles with that same mental torpor, which he occasionally beats back with Adderall, as well as crippling muscle pain, which he relieves with naltrexone, an opiate-addiction drug.
The way its written it makes it sound like he's on uppers and downers to survive :p This article in general really has a sensationalist feel to it
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Another is the comparison of the economic costs to headaches, tobacco etc is rather inappropriate, it should be compared to other medical illnesses...
I think it compares funding rather than economic costs, doesn't it? But, yes, they should have compared ME funding with MS funding, to illustrate the contrast. And I wish they'd included male pattern baldness as a compassion as well - I like that comparison.
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
Woah this article.........

The way its written it makes it sound like he's on uppers and downers to survive :p This article in general really has a sensationalist feel to it

I think the sad situation here, is each patient will be a subset and thus we've all been tricked.

So for some what is read is unfamiliar and what is read is 'just like them'.

Now naturally this is not the patients faults. It's the CDC's fault (they created CFS) and the British Department of Health (they created CFS/ME) to deny Ramsay's Myalgic Encephalomyetis.

For example, I'm sure some with CFS can tolerate Adderall and Naltrexone, whilst others would end up in ER and not know where they are due to the side effects.

This whole business of capturing a whole host of undiagnosed conditions, and calling them CFS is fundamentally wrong. Patients don't know what subset they are, and naturally will never agree with each other what works and what doesn't.

I wonder why the CDC set up a situation of divide and conquer via a diagnosis that is in response to claims of cluster 'outbreaks' of infection in allied military countries?

Stephen Straus said in writing to Fukuda (from Fukuda CFS criteria fame) CFS was ''politically acceptable''. I wonder why politics would need to be introduced to define a syndrome that you catch from an infection and never recover from? Hmm. It must be unexplained tiredness and not an stealth infection that infects white blood cells and stops you making antibodies to in a 2-tier test that doesn't even work and that is based on one strain you don't even have anyway. Which like CFS, is chronic, but cannot exist politically.

This corruption of the health agencies making CFS political should be in journalists minds, I guess the question is could they keep their jobs by ruffling feathers? It's probably not worth the bother. There's only 10x more infected now than AIDS.
 

panckage

Senior Member
Messages
777
Location
Vancouver, BC
I think the sad situation here, is each patient will be a subset and thus we've all been tricked.
I use LDN and ritalin and find them helpful so I'm in the same subset in regards to that. What I mean is by describing LDN as an 'opiate addiction' drug it sounds like he is on morphine or something like that. No problems if he is prescribed that, but if the average reader is anything like me it gives them totally the wrong idea about LDN.

It reminds me of back in 1960(?)'s when the UK gave heroin addicts both free heroin (to satisfy their addiction) as well as cocaine (so that they would be functional enough to work) . That was the theory anyways

I probably shouldn't complain though, this kind of sensationalism is common in journalism today and since I'm commenting on it it must mean it is successful o_O
 

duncan

Senior Member
Messages
2,240
panckage, I'm not sure if I'd use the word sensationalist, but I caught what I thought was a psychological undercurrent through-out a narrative that seemed, for the most part, good.

It appears she has changed the title and reduced the references to chronic fatigue. That is a very positive development. Still, the highlighting of schizophrenia, the adderal, qualifying naltrexone as an opiate-addiction drug...wording like "spent most of 2013 in bed" instead of bedridden (one sounds like he is lounging around).. temporarily paralyzed, temporarily blind..."devote a pot of money - they believe $250 million is realistic"(??? Is it me or do PWME sound unrealistically greedy?)..."Sleep isn't refreshing."...Sleep isn't refreshing??...PEM comes after "a bout of exercise."? ..."Type A sorts"? "The drudgery of fatigue..."?

I could go on but I will stop.

There is much that is good in here, much that is laudable. But for me a lot of that good was offset by a subtext of sorts. Some of these wording issues I've noted are technically correct, but somehow leave an impression less than desirable. It is the impression that concerns me. After all, this article is not appearing in a vacuum. We are swimming upstream against the tide, and every contrary ripple matters.

It should never be good enough that writers tackle ME/CFS. Like everyone else here, I am highly appreciative when any writer does brave this subject. Regardless, they need to impart truth, while making sure their message is not inadvertently derailed. That goal needs to be held against relentlessly high standards.
 
Last edited:

Aurator

Senior Member
Messages
625
This is all fine and dandy if you don't actually know they are 2 different conditions. One is based on Myalgic Encephalomyelitis signs (disease signs) one is based on Chronic Fatigue and 4 or more symptoms = CFS. Or in UK: Chronic Fatigue, PEM and 1 or more symptom.

None of these can even begin to match ME in anyway, with SEID getting better. ME patients don't even report fatigue to begin with, they report PAIN, INFECTION, MUSCLE WEAKNESS etc. None of which are required to have CFS.
I'm not quite sure of the point you're making here, but just in case I've misunderstood you, it's important to point out that some hopsitals in the UK (and presumably whole regions) do not give diagnoses of ME to anyone, whatever symptoms they may present with; they give diagnoses of CFS only; ME is not even part of their vocabulary.

There may well turn out to be two distinct diseases/conditions that people who at present variously get diagnoses of ME and CFS have, but there may turn out to be a far greater number of diseases/conditions, or in fact only one. No-one at present can say with authority what the case is.
 

searcher

Senior Member
Messages
567
Location
SF Bay Area
I think it compares funding rather than economic costs, doesn't it? But, yes, they should have compared ME funding with MS funding, to illustrate the contrast. And I wish they'd included male pattern baldness as a compassion as well - I like that comparison.
I looked a lot earlier this year for evidence that NIH spends more on baldness than CFS but couldn't find any reference at http://report.nih.gov/categorical_spending.aspx. Jennie Spotila told me she has looked too and hasn't found where that comparison came from, although I suspect there must have been at least one year where this was true. Have you seen any evidence? I would love to be able to use that stat as comparing our funding to that of male-pattern baldness would be even more powerful than comparing it to hay fever's funding.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I looked a lot earlier this year for evidence that NIH spends more on baldness than CFS but couldn't find any reference at http://report.nih.gov/categorical_spending.aspx. Jennie Spotila told me she has looked too and hasn't found where that comparison came from, although I suspect there must have been at least one year where this was true. Have you seen any evidence? I would love to be able to use that stat as comparing our funding to that of male-pattern baldness would be even more powerful than comparing it to hay fever's funding.

Nancy Klimas said it to Al Jazeera:

http://america.aljazeera.com/watch/...avethisdebilitatingdiseasewithalousyname.html
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I looked a lot earlier this year for evidence that NIH spends more on baldness than CFS but couldn't find any reference at http://report.nih.gov/categorical_spending.aspx. Jennie Spotila told me she has looked too and hasn't found where that comparison came from, although I suspect there must have been at least one year where this was true. Have you seen any evidence? I would love to be able to use that stat as comparing our funding to that of male-pattern baldness would be even more powerful than comparing it to hay fever's funding.

Dr Klimas also says it in this Canary video (towards the end but I can't see the time marker for some reason):

http://www.cortjohnson.org/blog/201...isease-doctor-never-heard-of-canary-coal-min/
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I looked a lot earlier this year for evidence that NIH spends more on baldness than CFS but couldn't find any reference at http://report.nih.gov/categorical_spending.aspx. Jennie Spotila told me she has looked too and hasn't found where that comparison came from, although I suspect there must have been at least one year where this was true. Have you seen any evidence? I would love to be able to use that stat as comparing our funding to that of male-pattern baldness would be even more powerful than comparing it to hay fever's funding.
Oh, thanks Searcher. I've seen it reported a few times, but I can't remember if I've seen the data myself. Probably not. If I come across it I'll let you know.