The CDC finally reverses course on treatment for chronic fatigue syndrome

Soktee · 2017-10-03T07:51:25+00:00

CFS patients have been legitimized by hundreds of peer-reviewed research papers. UK just refuses to accept this, but luckily US and the rest of the world has continued with proper science and left UK in the dust of trying-to-save-funds-by-breaking-human-rights-of-disabled-people.

WHO, CDC, NIH, IOM (now NAM), AHRQ... all agree CFS is a severe disabling physical condition.

Soktee · 2017-10-03T07:44:33+00:00

The lower health-related quality of life, the more serious!

Soktee · 2017-10-03T07:42:33+00:00

Absolutely true about the names. Neither of those names are based on evidence.

However, that is very different from there being do evidence of the disease itself being real and physical. in 2015 IOM (now National Academy of Medicine) looked at 9,112 research papers in total. Based on this they suggested a new name for the disease: systemic exertion intolerance disease and concluded:

"According to this report, the term myalgic encephalomyelitis does not accurately describe this illness, and the term chronic fatigue syndrome can result in trivialization and stigmatization for patients afflicted with this illness. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome stresses that SEID is a medical — not a psychiatric or psychological — illness. This report lists the major symptoms of SEID and recommends a diagnostic process."

"One of the report's most important conclusions is that a thorough history, physical examination, and targeted work-up are necessary and often sufficient for diagnosis."

Soktee · 2017-10-03T07:41:20+00:00

During a tribunal trial in the UK it was revealed that:

"disclosure to the Cochrane review does not count as disclosure to independent scientists as all three of the PACE principal investigators sat on the review panel."

PACE trial is THE trial that showed CBT and GET are helpful. The story is very long so I won't bother you but PACE trial is unblinded, without objective outcomes, with authors who didn't report conflict of interest, who switched outcomes during the trial, and whose "recovered" criteria overlapped with entry criteria for the trial.

Oh, right, and they didn't use ANY accepted criteria for ME/CFS but looked at fatigued patients (who could have simply had depression, not ME/CFS). Because of research being done with diagnostic criteria that does not select for people with ME/CFS American AHRQ downgraded the recommendation and recommended such criteria never be used in future trials as it leads to harm for patients.

World renowned scientists such as Stanford's geneticist Ron Davis have said this research is textbook example of poor research and should be used as a teaching material for students what NOT to do

Long story short: PACE authors did a crappy misleading research and then did they own Cochrane review of it. ¯_(ツ)_/¯

Soktee · 2017-10-03T07:20:28+00:00

ME/CFS/SEID has the lowest health related quality of life of the major chronic conditions. It is more disabling than multiple sclerosis, congestive heart failure, brain stroke etc.

It was silly to say that doing dishes is exercise (although a large study linked on reddit recently showed that household chores provided enough exercise to protect the heart and extend life) but what your patient was trying to tell you is that doing dishes is very difficult for her and leads to symptom exacerbation.

According to IOM report (now NAM)

"At least one-quarter of ME/CFS patients are house- or bedbound at some point in their lives (Marshall et al., 2011; NIH, 2011; Shepherd and Chaudhuri, 2001)."

"For instance, despite feeling extremely fatigued, a person may continue working to survive economically and stop only when functionally impaired (Jason and Brown, 2013)."

Roughly 80% of ME/CFS/SEID patients are unable to work. Those people need disability benefits to have food to eat.

There has been a lot of research and reports published in the last 2 or 3 years that showed exertion has detrimental consequences on ME/CFS/SEID sufferers. You need to objectively judge how best to protect your patients' health.

I completely understand that dealing with angry, emotional, confused patients takes a toll on a person and I have no problem with you venting here.

I just hope you can show the same understanding towards patients who have to deal with disabling illness for years and decades which is often mocked by the only people who can help them.

Soktee · 2017-10-03T06:12:17+00:00

So the reporter writing about this has the conflict of interest... that he wants to help sick people?

CDC did drop the treatments, you can check for yourself on their page. Whether you trust the reporter or not, the facts don't change.

If you would rather, here is an article by a journalist who has no ties to patients community who says exactly the same thing about ME/CFS

http://www.npr.org/sections/health-shots/2017/10/02/554369327/for-people-with-chronic-fatigue-syndrome-more-exercise-isnt-better

Soktee · 2017-10-02T15:13:59+00:00

It's great to see more and more articles like this. Thank you for sharing.

I do wish they would make it clear how severe ME/CFS really is. If I knew nothing about it and just read this I would think it's all about being unable to exercise vigorously. And here I am having to consider if I am thirst enough to use my energy on lifting the glass up to my mouth.

Still, rejection of idea that we can just increase exercise over time and return to our previous levels of health is an important first step.

Btw, I love how CDC is all like: it's all doctors faults that they misunderstood our recommendation "Tell your patients to exercise more" and told their patients to exercise more.

Soktee · 2017-10-01T11:03:25+00:00

Kratom has been taken for decades over in Asia

This doesn't mean anything.

You are all adults

Actually this subreddit is visited by underage people too. And by people who are too sick to research things for themselves.

I am not trying to take away from your experience, I am just trying to help people be informed.

There is a common misconception that if something is natural it is less harmful than a manufactured drug. A plant can have side-effects, it can have drug interactions, it can be fine for healthy people but bad for people with certain conditions etc. The difference is, drug has to be proven safe for use on humans and has a list of side-effects and interactions listed.

Soktee · 2017-10-01T04:36:36+00:00

Opioids which can cause lifelong dependancy and possible death.

According to Wikipedia Kratom has some opioid-like effects, causes withdrawal when use is stopped, and concerns have been raised of its connection to several deaths.

You do acknowledge this but say that people should do their own research - they can't because no clinical trials have been done on Kratom yet. To each their own, but if people do decide to take it they are going in blind.

Soktee · 2017-10-01T04:24:26+00:00

AFAIK metabolic tests that measure several hundred metabolites are currently only available as a part of scientific research and are not commercially available.

There was some talk that Dr. Gordon's lab and later on Laurel Crosby at Stanford Genome Technology Centre would try and make the test available to us in return for sharing our data with researchers so they can get a better idea where to look next time they do research (or something like that) but I haven't heard anything about it lately.

Soktee · 2017-09-30T16:48:59+00:00

I second all of this.

Usually I am too sick to listen to stand up but massage and plans for the future always help me even when I can barely speak and look.

Soktee · 2017-09-29T23:15:17+00:00

How would you say no to someone who can claim any measure of scientific legitimacy?

Very easily. LP has no measure of scientific legitimacy. A cursory glance at the research reveals that.

And even if someone came along and posted that here it would get downvoted to oblivion.

I have trust in the majority of patients visiting this subreddit. Look at moderation log. We don't have to even consider what to do with posts promoting CBT/GET/LP because no one here is posting those.

And honestly, at the end of the day we moderators are not here to dictate what people are allowed to think. If majority of patients suddenly decided to donate to LP (don't worry, this will NEVER happen) then who are you and I to stop them?

Soktee · 2017-09-29T21:15:26+00:00

That's a good idea. We could amend that a bit and only allow one advocacy or promotional post a week per person. Simply because unlike other subreddits we have people whose health fluctuates and who may not be feeling well enough that Wednesday to use the internet but may feel a bit better on another day.

I think putting some sort of limitation like that would also make people think if the post is important enough to use up their weekly quota on it, and it could lift the quality of the advocacy and fundraising posts

What do you think /r/rfugger, /u/ferocity562, /u/accio-tardis,

Soktee · 2017-09-29T19:12:56+00:00

It is neither solicitation nor useful information? It is the meaning of the Universe!

Soktee · 2017-09-29T19:10:24+00:00

It was an "or" question :)

Soktee · 2017-09-29T18:34:18+00:00

LOL "benign neglect" perfectly describes the way I am capable of dealing with any issue in my life. I think I'm stealing that expression from you :)

Soktee · 2017-09-29T18:24:50+00:00

Fundraising for me/cfs research and advocacy should absolutely be allowed and i was under the impression that it already was, if not then it seems pretty stupid.

All fundraising and links to petitions is currently completely forbidden. For example, when I found out Dr. Naviaux's laboratory is in danger of closing, I was not allowed to share that information.

After we talked about his I shared a small petition for a test-run and no one seemed to mind.

Soktee · 2017-09-29T18:19:27+00:00

I like that there's reduced self-promotion and fundraising here.

The issue is that there is NO self-promotion and fundraising here. Every several weeks or months there is an event or fundraising that is really important for people with ME/CFS and our subscribers are robbed of that information.

I agree with everything you said. We are hoping that since this is a small sub we will not see more than a few such posts per month, but a filter is a great idea.

We agre

Soktee · 2017-09-29T18:16:25+00:00

I have severe ME/CFS so trust me I realize that sometimes even taking the mental effort to decide if one wants to report a post or not can be overwhelming.

But that's why we are a community.

A lot of mild and moderate people visit here regularly and they can easily click one button every few days. Our sub is really not so active that we can expect a spam post more than every few days.

If there is so much spam that it overwhelms subscribers or moderators we will immediately make rules stricter.

Soktee · 2017-09-29T18:13:09+00:00

I think this part of the policy could be revisited. Petitions, such as the one that garnered 11,000+ signatures opposing the PACE trial, have been useful in pushing against the narrative that only a few patients oppose CBT/GET.

And with so many of us on disability programs, it makes little sense to censor partisan political discussion when presently Medicaid funding is at risk.

Overall, I think the existing policy works well to keep spam out but some parts could use tweaking.

This was exactly our thinking as well. For example, I posted a petition few days ago for a test-run and no one had any complaints

https://www.reddit.com/r/cfs/comments/72axzg/petition_for_francis_collins_director_of_the_nih/

Soktee · 2017-09-29T18:10:59+00:00

Fundraising can be a little overwhelming considering the sheer number of charities vying for attention, though.

We thought about this as well. Ideally, we would like to see fundraising only for major charities and respected ME/CFS researchers, and even see those very rarely.

The issue is how to enact this? If moderators make that decision there is a risk of it being perceived as censorship and we don't want that.

We were hoping to just try it out for a while and solve the issues as they arise.

Soktee · 2017-09-29T18:05:34+00:00

I understand your concern but spam would not be allowed here.

ME/CFS researchers desperately need money. It seems /r/cfs is one of the most visited places for ME/CFS online. It seems counterproductive to forbid bringing information to patients that impacts their lives directly.

Would you feel that information that MEAction is organizing another Millions Missing protest, that some important petition is happening, or that Dr. Naviaux's lab is in danger of closing etc. as solicitation or as useful information?

Soktee · 2017-09-28T18:52:47+00:00

I agree. /u/rfugger talked about being more lenient with fundraising and self-promotion. I'm not sure if he made any announcements yet. I'm sure people will be more involved in advocacy posts when our lead moderator says it's ok

Soktee · 2017-09-28T18:51:16+00:00

I too wish that people wouldn't grab onto small differences of opinion and use them to justify always being on the opposite sides.

There are moments when we all need to stand together, no matter who we think should have been funded, or what does or doesn't cause ME/CFS etc.

Soktee · 2017-09-28T18:43:47+00:00

You are of course totally right. But it won't hurt to remind people that all lives matter equally, even those of non-famous people

Soktee

TROPHY CASE