
Fighting Over Fatigue - tomkwok
http://mosaicscience.com/chronic-fatigue-syndrome-me
======
eukaryote
From what I recall, the result of the PACE trail was a bit of a farce. There
were 3 categories of outcome for the patient: no change, better, or worse.
Each of these categories contains roughly a third of the subjects. Despite
such a glaring failure to produce a useful treatment, the PR spin focused on
the third that got better, rather than the third of patients who got worse
after the PACE treatment.

Surely this kind of breaks the medical tradition of "first, do no harm". The
anger generated by ME patients in the UK was caused by the fact that it was
proposed they would lose their benefits if they did not participate on a PACE
treatment, a treatment that caused no improvement or made ME patients worse in
66% of the trail subjects.

A more open mind must be taken by researchers when approaching ME as a
illness. They must remember they are dealing with subjects that have
frequently dismissed as lazy, over-sensitive, and in many cases lying about
their symptoms.

Disclaimer: I had ME for 2.5 years about 25 years ago, so I have been subject
to family, doctors, friends and even strangers dismissing my muscle pain,
blinding headaches, insomnia, continuous cramps and inability to regulate my
body temperature as "all in the mind".

I wish anyone reading this who is suffering from ME all my best wishes - I
remember clearly how ME feels.

I am now a healthy 45 year old man, who can now play tennis for 4-5 hours
continuously without ill effect. There can be a future after ME for all of us
if medical researchers continue to search for a solution, rather than
classifying it as "all in the mind" as the PACE trail was seemingly intended.

~~~
cpncrunch
>From what I recall, the result of the PACE trail was a bit of a farce. There
were 3 categories of outcome for the patient: no change, better, or worse.
Each of these categories contains roughly a third of the subjects. Despite
such a glaring failure to produce a useful treatment, the PR spin focused on
the third that got better, rather than the third of patients who got worse
after the PACE treatment.

I'm not sure where you got that info. I just had a look at the 2011 and 2013
papers, and didn't see that. You're implying that treatment had no benefit,
but that's definitely _not_ what they found. If you look at the results,
you'll see that CBT and GET did result in an improvement in the average scores
of patients. It wasn't a huge improvement, but it certainly was an
improvement.

~~~
eukaryote
I did not imply the treatment had no benefit. I stated that one third got
better, one third had no change, and one third got worse. This is not a good
result - a third of the participants got worse.

In addition, 13% of the participants on the trial had already recovered before
the trail began, but were not excluded.

Finally, the thresholds for being “recovered” demonstrated worse health than
the scores required in the first place to demonstrate the severe disability
needed to enter the trial. This anomaly meant that some participants could get
worse on physical function and fatigue during the trial and still be included
in the results as being “recovered.”

“I’m shocked that the Lancet published it,” said Ronald Davis, a well-known
geneticist at Stanford University and the director of the scientific advisory
board of the Open Medicine Foundation.

“The PACE study has so many flaws and there are so many questions you’d want
to ask about it that I don’t understand how it got through any kind of peer
review”, added Davis.

~~~
cpncrunch
>I did not imply the treatment had no benefit. I stated that one third got
better, one third had no change, and one third got worse. This is not a good
result - a third of the participants got worse.

Do you have a reference for that? Overall, patients got slightly better on
average. Even if some got slightly worse, on average there was an overall
benefit.

>In addition, 13% of the participants on the trial had already recovered
before the trail began, but were not excluded.

That's incorrect. The physical function was just one measure. To be counted as
recovered, patients needed to meet other criteria and it would have been
impossible for patients to be recovered at baseline. This seems to be a piece
of misinformation that is spreading around patient forums. You're better
reading the study itself rather than other people's (perhaps flawed)
interpretation of it.

------
mattmol
I had CFS and I believe it is almost always physical. It’s hard to tell
because it feels mental. I saw a ton of different Drs and endocrinologists who
all told me I was physically fine and it was mental. I looked healthy, I felt
depressed. It significantly impacted my life.

After many years of self experimentation and internet reading here is what
made sense for me. I had high T4, low T3, and low cortisol levels. My working
theory is subclinical hypothyroidism and adrenal fatigue. The theory for the
cause is long term high levels of stress (tech startup) and imbalanced
microbiota.

I treat it with natural desiccated thyroid (edit: not compacted thyroid),
licorice root, light therapy, blue blockers, strict sleep schedule, quit
coffee, regular exercise, paleo diet, probiotics, and fermented food. The
thyroid meds made the biggest and most immediate difference, it was like
switching a light back on. I’ve quickly turned into a hippy and I’ve never
felt better.

Thank you internet!

~~~
cpncrunch
It's really hard to tell just from symptoms whether it is mental or physical.
And from your explanation, it sounds like you're saying it was from stress
(i.e. mental), but caused physical effects (reduced cortisol, etc). It's well
known that stress causes these effects. I'm not sure it's helpful calling it
either physical or mental. Psychosomatic is the correct term, but it is widely
misunderstood (most people think it means "imaginary"). Perhaps functional is
the best term to use.

As for treatment: what exactly is compacted thyroid, and how would it help
with cortisol? The low cortisol in chronic stress is central in nature (due to
changes in the brain), so how would any of your treatments change your brain?

Bear in mind that psychiatric interventions and have been proven to treat low
cortisol, so it could just be the lifestyle changes you made that resulted in
improvement.

~~~
DanBC
> Psychosomatic

Somatoform or somatic symptom disorder is newer and preferred, because of the
stigma perpetuated by people saying things like "it's not all in my head".

[https://en.wikipedia.org/wiki/Somatic_symptom_disorder](https://en.wikipedia.org/wiki/Somatic_symptom_disorder)

> exactly is compacted thyroid

There's a bunch of people who don't meet the clinical threshold for inactive
thyroid, but who think that thyroid medication would help them. They either
take thyroxine, or they take thyroid extract. In England there are a couple of
quack doctors who make their living selling nutrient supplements and thyroid
extracts to private patients.

(EG Dr Sarah Myhill, who was ordered by the GMC to fix her website)

~~~
cpncrunch
>Somatoform or somatic symptom disorder is newer and preferred

I'm not sure if that really helps though, as there is still a large stigma (as
you'll see in all the CFS patient forums to terms such as FSS).

------
mamcx
I'm unsure if I have something like the fatigue disorder. so where I can check
for a test or something?

Is very unlikely I will find a local doctor for it. After 10 years with
fatigue all days them only say: Rest more, eat this pill to rest more.

~~~
cpncrunch
Unfortunately there is no definitive test for CFS. The closest is measuring
morning cortisol, or measuring ACTH during a stress test.

Also, rest isn't necessarily the best option. Reducing stress and increasing
activity (within limits) is a good start.

------
Madmallard
mitochondrial dysfunction or dysfunction of genes related to energy metabolism

It's time to make tests for these mainstream. They're basically hidden and so
many people with potentially fatal diseases like MELAS are just being thrown
around medical facilities, their money being sucked out of them, and
eventually either being spit out or an angel of reasoning comes in to help
them out.

There's plenty of research showing varying mental illnesses having a "too much
oxidative stress" or "not enough ATP" pattern to them.

