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

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New Understanding of Chronic Fatigue Can Pave Way to Better Treatment

aaron_c

aaron_c

Senior Member
Messages
691
Lol @JaimeS ... how long have you been waiting for that rhetorical setup? :)

Also: I love how he is credible because he has glasses. I wonder if anyone has ever done a study to see if bespeckacled (glasses-wearing) scientists make more money than those wearing contact lenses? Glasses, the tallness/attractiveness/penises of the scientific workplace?

Comet said:
The Credible Hulk... :lol: :rofl: :lol:

Will he be speaking at any MillionsMissing rallies? :cool:
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Isn't he a super-genius with near-unlimited funding? I see other possibilities.

Aaaand we have veered way off topic.
 
JaimeS

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
aaron_c said:
how long have you been waiting for that rhetorical setup?
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Came up with it on the fly, @aaron_c :cool:

aaron_c said:
I love how he is credible because he has glasses.
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YAS. I have them too. However, I have none of the other 'advantages' you mention.

aaron_c said:
Isn't he a super-genius with near-unlimited funding? I see other possibilities.
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Well, if we could conscript Bruce Banner into working on ME, he would have...

...well, turned us all into giant green monsters incapable of controlling our rage.

Maybe not.

-J
 
Rick Sanchez

Rick Sanchez

Messages
84
Ben Howell said:
:wide-eyed:

Damn! So thats where I've gone wrong...my old HIIT routines were the answer! As simple as 'increasing' dem mitochodrias :rofl:


View attachment 16561
18bt07.jpg


(Poke at ridiculous vagueness and simplicity)

It all started quite well....


B
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Made me laugh way too hard. Sometimes I feel like we need more shitposts and dank memes to brighten up the forums on some of the more gloomy days.
 
Woolie

Woolie

Senior Member
Messages
3,263
JPV said:
Either way, regardless of what you think, Terry Wahls is a very credible advocate of the power of good nutrition in the healing process.
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I'm sorry to have been so offhand @JPV. I thought you were being tongue in cheek about the diet for MS thing. And if you've found diet helpful yourself, that's great, and I would never want to attack people who've found something that works for them.

The people I want to attack are the peddlers who are talking up these sorts of interventions way beyond their remit, and making a cure look all so simple.
 
G

Groggy Doggy

Guest
Messages
1,130
Gijs said:
There is no hard data. It is about fatique in general not ME. 'Real' ME patiënts are rare. This make big ME studies even more complicated. Real ME is one disease not heterogenic at all. If their are really millions of ME patiënts this disease would be much more regonised by ordinary people because many people would know some patiënts, that is not the case. Millions is bullshit, sorry.
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Let me see. If the US population is 319M and 1 to 2 out of every 319 people has ME, then I totally agree with the stats. I know about 100 people, and one has ME (she was misdiagnosed with Fibromyalgia, but she has the exact symptoms I have). So in my case, using 1/100 people that have ME as detailed in IOM report symptom list, then the number in the US would be much higher than 1 million to 2.5 million estimate.
 
Research 1st

Research 1st

Severe ME, POTS & MCAS.
Messages
768
AndyPR said:
So what is the definition of 'real' ME then?
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ME vs CFS explained below:

CFS is what the CDC created for political reasons in 1988. Raw CFS is simply a fatigue syndrome created in response to American 'outbreak' clusters of post infectious chronic disease (ME) of which fatigue is the core disabling symptom and which is unexplained and not life long. CFS does not require any form of infectious trigger, or abnormal medical signs though - crazy, but true. This means very ill people get told they have CFS, and the healthy sick get told they have CFS. This destroys the legitimacy, which is why it was created like this on purpose, to do such a thing for political gain.

Vs

ME was recognized in 1969 by W.H.O. ME is complex neurological disorder in which is often Post Infectious: Unlike CFS to have ME the patient should show: (Weak Breathing Muscles, Permanent headache, Abnormal reflexes, Standing/Walking is impaired or impossible, Post Exertional Relapse after minor exertion is the hallmark of the condition (NB: post exertional malaise is not required in Fukuda CFS), plus a whole host of neurological signs:

Muscle Fasciculations, cramps (as in MS) Blespharospasm, Nystygmus, CNS Cardiac pain inc Vasospasm Angina, Cardiac Arrhythmia events inc SVT on ECG, Temperature dysregulation inc Low core temperature after exercise, Tinnitus, Photophobia, Vertigo, Dysautonomia, Muscle Weakness/Pain, Facial Palour/slurred speech after speaking, Confusion, increased pulse rate. Low blood sugar events etc). This is all classic 'ME' signs (a doctor can test a lot of them or observe them), and not a single of the above is required to be diagnosed with CFS, CFS/ME, or ME/CFS.

But here's the catch:

Many with organic disease CFS will read that and say, wait a second, that list of ME is describing my disease based CFS though. Except it's not is it?. CFS does not require any of the above, ever. So it's not describing Fukuda CFS, it's ME.

Americans CDC caused CFS (created it) and Americans trapped their own people in it focussing on fatigue- thanks CDC.

Solution:

Patients need to be in an appropriate 'home', be it mild or bed ridden. For severe systemic disease, CFS is not the appropriate home, as always, the patient is presumed to have a fatigue syndrome of unexplained cause. This is dangerous to the patient who may develop serious problems such as Cancer, Diabetes, Allergies who aren't screened for these (Post diagnosis, PWCFS are not given follow up appointments, believing there is no 'disease' to monitor). Hence people very sick (outside America) use the term ME, some Americans even use the term.

The bottom line is, ME should have the above signs (I listed a few) of ME, and CFS, they don't have to be there at all. Hence CFS is a fatigue disorder and ME is not.

To answer your question:

This is why some ME patients say 'genuine ME', because they mean people who authentically display the classic signs of Ramsay ME, not those with Chronic Fatigue based syndromes who use the term out of habit, or because someone misidiagnosed them with ME when they have Fukuda CFS only.

For the record, I never met the criteria for ME for years. I barely met the criteria for Fukuda CFS either. In fact, when someone once suggested I had 'ME', I laughed at idea someone could be so mentally 'weak', that they couldn't pull themselves out of bed as the mind can overcome anything, I thought, as by then I was used to being housebound with the mysterious 'CFS'. When I developed severe ME after a virus (that paralysed me and put me in hospital for months), an entirely different disease affected me, and altered my life forever, being attached to ECG's and having muscle biopsies. Even the doctors agreed that a 'Chronic Fatigue' doesn't make someone unable to move or speak, as 'fatigue' is a normal experience of everyday human life. We all feel fatigue, and it's not called Chronic Overwhelming Exhaustion to the point of Collapse syndrome, it's just called Chronic Fatigue Syndrome and the diagnosis never needs anything to be wrong - very very important point.

This made me realise how different Fukuda CFS is, to ME. It's not a competition, but it's important to understand if a patient uses the term: CFS/ME or ME/CFS, they realize how dangerous the CDC's creation is, if they have severe disease. You will also notice people with severe ME, very rarely use the term ME/CFS, or CFS/ME, precisely as it is the CDC's Fukuda CFS that has helped wreck their lives (in an outside of America), by doctors presuming as ME sufferers, they have FATIGUE as the core complaint and then follow CDC and British 'CBT/GET/Psychobabble' irrational therapies.

That's another reason people use the term ME, for their own personal safety when dealing with the medical profession. Having being psychologically tortured in hospital, and abused (forced GET, not fed, not given water, not taken to toilet, not spoken to - all for months at a time), I can tell you that CFS label ruined my life, as when I first got sick (ironically when I didn't meet ME criteria) people use the term ME and no one was 'suspicious' of me, they just didn't know why I was ill.

When I got really sick, years later, and hospitalized, ME had been replaced in America by CFS, and imported into Europe. British psychiatrists then killed off ME through hatred of the patients (using the media) and the rest is history. Ergo, EVERYONE with ME now was presumed to be 'tired' to have the CFS and the cause was always presumed psychological or a mixture of both.

ME may well be a rusty old wheelbarrow in terms of accuracy, but it's a lot safer than holding the chocolate tea pot of Fukuda CFS. This is why people cling onto ME, like a life raft, albeit with nowhere to paddle to, and no stamina to reach land even if there was.

The whole situation is a complete disaster for patients, their partners, their carers, their families and even their doctors.
 
Woolie

Woolie

Senior Member
Messages
3,263
JaimeS

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Groggy Doggy said:
The treatments look well suited for someone that is working long hours, not eating well, struggling with work/life balance, and not getting enough sleep. I just wished they used another description like 'chronically tired & stressed' instead of CFS.
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I'm even okay with 'adrenal exhaustion' to describe that. Just... wish ppl would stop conflating.
 
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