The Abundant Energy Summit

[Aurator]

There are gargantuan quantities of claptrap served up on that site that have nothing to do with ME/CFS, and the culprits know it. Assuming this is not a scam, as others have suggested, the overriding feeling I'm left with is one of distaste for many of the people involved there. Either they're essentially intelligent people who don't believe in what they're spouting but are simply bringing home the bacon (in which case they're charlatans), or they're just plain wackos.
There should be laws against exposing the chronically sick and vulnerable to the kind of poorly examined, unscientific theorizing on show there; the professional status of the speakers makes it all seem very plausible to the unwary.

 

[whodathunkit]

@Sushi, thanks for all that background on Ken Wilber. Until this thread and yours and @mango 's posts I didn't know anything about Lake Tahoe and CFS, and I had forgotten a lot about him in general. I'm even rethinking my dominant memory of him as a bit too hippy-dippy...going to revisit. I've noticed things on this forum seem to appear before my eyes when it's time to try them (or circle back to them, as the case may be). It's been nearly 10 years since I've looked at his stuff and it sounds like it may be time again.

 

[jimells]

Either it is logical and/or feasible or it is irrational. It may be natural, surgical or pharmaceutical.

How about magic?

 

[jimells]

Alternative to the current dominant paradigm of using only patentable pharmaceutical medications and surgery to effect healing.

That's a good start, but it needs to be a little more restrictive to be useful to me. When this definition opens the door to let in unpatentable substances, the woo-woo stuff barges right in. That's not a big problem if one insists that treatments and hypotheses are tested - the good old fashioned "scientific method". Unfortunately no one's going to pay to do this properly as there is little profit in it.

Also alternative to the medical culture that values "quantifiable" lab results over symptoms. If your lab results are at the extreme end of normal but still within the normal range, you are not sick, even though you are manifesting all symptoms of an illness. Surely we've all been zapped at one time or another by that mindset...?

Diagnosis-by-software seems like a fairly short step from today's diagnosis-by-lab-report. I certainly would rather be diagnosed by a real person who has the time to do a proper exam and maybe even think about it for a while.

 

[whodathunkit]

the woo-woo stuff barges right in

As someone who has benefited much more by what is typically adjudged to be the "woo woo stuff", I see this as more of a feature, not a bug. But we can agree to disagree about the value of woo.

Unfortunately no one's going to pay to do this properly as there is little profit in it.

Nail, meet head. Edited to add: I mean hammer! Nail, meet hammer! I hate mangling metaphors...Edited again: This metaphor makes no sense at all.

Anyway, @jimells: you hit the nail on the head. Presumably with a hammer. *sigh*

Diagnosis-by-software seems like a fairly short step from today's diagnosis-by-lab-report. I certainly would rather be diagnosed by a real person who has the time to do a proper exam and maybe even think about it for a while.

Me, too. Problem is that many mainstream medical doctors don't. They punt the task of critical thinking right onto the lab report. Labs normal? Nothing's wrong with you. NEXT!

 

[Sushi]

I'm even rethinking my dominant memory of him as a bit too hippy-dippy...going to revisit.

More like smart, smart than hippy--dippy. He was pre-med at Duke until he switched universities to get his Ph.D. in Biochem. I used to listen to CDs of his talks and found them very intelligent and engaging. A couple of his books show hilarious social insight and his semi bio telling of his wife's struggle with cancer (Grace and Grit) is a wonderful mix of biography, philosophy and a great love story with a very sad ending--his wife's death.

 

[redaxe]

Looks a fair statement to me. Interesting, and correct, that you did not put doctors in the list. I can think of some on the list that might be a bit wide of the mark at times too but air-traffic controllers and pilots certainly qualify. I remember a pilot friend pointing out that he had to get 100% on a revalidation exam every 6 months whereas doctors needn't bother with that (they do a bit now).

But it might be interesting to know the jobs PWME were doing when they got ill. There are studies of socioeconomic class, which are conflicting, but I am not aware of specific jobs. Has anyone seen anything like that? It could be possible that PWME tend to have a 'control freak' hypothalamus that is sensitive to crashing after infection. I am not saying I think it is at all likely but it would be reasonable science to try to get evidence for/against that.

Oh for sure not every accountant or lawyer would be a perfectionist and some industries employing lawyers and accountants would let you get away with a 'near enough is good enough' attitude whereas others being a perfectionist is almost mandatory. Family law for instance has some focus on mediation between the 2 parties but medical litigation or corporate law is a whole different thing. I had a parent work for a lawyer in medical litigation and my outside observation is that it was an extremely stressful and demanding environment.
But certainly if I was flying I'd prefer my pilot and air traffic controllers to be perfectionists but I'd hate to have a perfectionist as a boss

But I think this would be a nightmare of a concept to actually research. For starters how do you scientifically validate that a person has a perfectionist attitude? Personality traits can change or develop over a persons life and particularly with career progression. Watch Full Metal Jacket for instance and witness how Jokers personality changes throughout the film.
Someone with CFS/ME might be angry at their lost their quality of life so they take on a more perfectionist attitude.

The assessment tests are not double-blinded. The patient either has to fill out questionnaires that allow him/her to input bias or the psychologist has to assess the patient and profile their patients personality therefore adding their own bias.
For instance I've filled out numerous psychology personality profile tests in the past. I often struggle to answer certain questions because sometime I've seen a trait in myself and other times I haven't so my answers are often vague and contradictory.

What would also worry me is that it would be notoriously easy for a researcher with an agenda to make the data show that ME/CFS people are perfectionists. Well we've basically seen this already. Whilst it might be a valid subject to research I would have no confidence that the type of people doing the research can eliminate bias.

Lastly what would it really achieve? Even if you could prove that perfectionists are more prone to some diseases so what?
That doesn't help us with treatments it just leads us back to the dead-end of CBT.

 

[Hutan]

ugh. the perfectionism thing.

And that way what could be 'just' a crazy theory becomes a constant nuisance to patients, and sometimes even a direct danger to their wellbeing.

Below is an excerpt I wrote to an annoying specialist who suggested to me that people with CFS are high achievers (a variation on the perfectionist idea). I've quoted it in another thread so sorry to those who have seen it before.

A number of doctors have made the same comment to me about CFS being a disease of high achievers as you did, with some helpfully clarifying that the illness is a consequence of driven personalities when paired with bodies that can’t cope with the pressure. I’m not saying that you yourself meant to blame me for my illness, just that it is a logical conclusion of the viewpoint that CFS is a disease of high achievers.

I have thought about and looked in to this statement about high achievers a bit as I, my children and my Indonesian colleague’s child would probably have been characterised as high achievers and we all have the same illness. It is possible that high achievers might push through symptoms rather than resting and so predispose themselves to developing this chronic condition. But my son is a laid-back, minimal effort kind of high achiever and he has probably been the most ill in my family.

Actually there is no good evidence to support the idea that a person’s personality affects the likelihood of them developing tightly defined ME/CFS (as opposed to nebulous chronic fatigue). In the over 60 documented outbreaks of CFS, a wide range of people were affected. There is however good evidence that CFS is significantly under-diagnosed in non-Caucasian populations and populations that are poor and under-educated. I think what is really happening here is that it takes resources, self-esteem and strong motivation to keep turning up at doctor’s surgeries long enough to go through all the exclusionary tests and to eventually arrive at the CFS diagnosis. High achievers may therefore be over-represented in diagnosed CFS patients.

‘Resources’, because it often costs a lot to see a specialist in any useful time frame and undergo required tests and typically a CFS patient has to see many doctors before a diagnosis is made. This is at a time when they often are too sick to earn an income. And when it becomes clear that the specialists can’t help, it often makes economic sense to just withdraw from the medical system. Also, it takes mental and physical effort to arrange referrals and get to specialist appointments. When there is barely enough energy to just get through the day, attending an appointment that you know is unlikely to help and will probably be emotionally draining can be a low priority. High-achievers are more likely to have the resources and support to persist in engaging with the medical profession.

‘Self-esteem’, because if you have been told all your life that you aren’t trying hard enough in school and work and some part of you believes that you are weak and lazy then you might readily accept a medical opinion that it is just that you aren’t working hard enough to get better. You might be in awe of doctors and accept their verdict that you are just depressed, not getting enough sleep, getting old, menopausal or making it all up to get attention. Parents of a child with CFS who had previously been struggling at school might readily accept pronouncements from psychologists that the child is engaging in school avoidance behaviour. Conversely, if you have achieved success and overcome difficulties and if you like your work or school, then you can trust your own viewpoint and hold on to the belief that you are really, medically ill a bit longer in the face of relentless suggestions otherwise.

I think it is also likely that people who don’t have particularly demanding or rigid jobs or ambitious goals can better accommodate the reduced productivity that goes with a mild case of CFS. So it is likely that a high achieving athlete or professional will be more motivated to continue to seek a diagnosis and treatment than a housewife with school age children who can sweep the floor less often and can sometimes lie down when she needs to.

This idea that CFS is the disease of high-achievers is a harmful myth. It suggests a significant behavioural cause. It therefore infers the patient’s faulty thinking and behaviour is to blame and helps to direct research efforts away from biomedical causes.

 

[crowquill]

"Many alternative treatments are stuck in that category because they have consistently failed to show any medical benefits whatsoever. When drinking water or channelling energy can be shown in double-blind randomised tests to have any benefits at all apart from the pleasant feelings of quenching thirst or lying down and being pampered, then homeopathy and reiki would rightly become part of medicine. Until then they are alternative, or complementary, or whatever."

This is true for some treatments but others are ignored because, as someone else pointed out, there is no profit to be made in developing them and therefore money available for randomised control trials.

I was interested that recently a control trial showed the benefits of chaste tree (Vitex agnus-castus) in treating PMT and therefore proclaimed its veracity. This plant has been used for that purpose since Roman times but does it count as alternative medicine until the medical community has pronounced based on a RCT despite its effectiveness being the same before and after?

How many more effective treatments are sidelined because no one has done the gold standard research? NICE (National Institute of Clinical Excellence) in the UK states that there is no empirical evidence for the effectiveness of supplements such as L-carnitine, D-ribose and co-enzyme Q10 in the treatment of ME/CFS so these are considered alternative and unproven treatments. Yet the theoretical biochemical basis for their usage is strong and there are numerous accounts of people being helped by these under Dr Myhill's protocol among others.

Yes, in an ideal world good alternative medicine would rapidly become part of the standard medical treatment. However, there are vested interests in terms of both profit and ideas (the psychiatric control of ME/CFS in the UK pretty much ensures they get most of the funding over biological research) and it can take a long time for the mainstream to catch on, often far later than patients who have much more incentive to try new treatments. For us, the challenge is working out which treatment is quackery and which has promise.

Andy

 

[MeSci]

Looks a fair statement to me. Interesting, and correct, that you did not put doctors in the list. I can think of some on the list that might be a bit wide of the mark at times too but air-traffic controllers and pilots certainly qualify. I remember a pilot friend pointing out that he had to get 100% on a revalidation exam every 6 months whereas doctors needn't bother with that (they do a bit now).

But it might be interesting to know the jobs PWME were doing when they got ill. There are studies of socioeconomic class, which are conflicting, but I am not aware of specific jobs. Has anyone seen anything like that? It could be possible that PWME tend to have a 'control freak' hypothalamus that is sensitive to crashing after infection. I am not saying I think it is at all likely but it would be reasonable science to try to get evidence for/against that.

I didn't have any jobs that specifically required perfectionism, but I WAS perfectionist, and have only reduced my perfectionism relatively recently, because I will be able to retire soon and because I have much less energy, and have had to prioritise essentials and let other things go.

 

[MeSci]

That's a good start, but it needs to be a little more restrictive to be useful to me. When this definition opens the door to let in unpatentable substances, the woo-woo stuff barges right in. That's not a big problem if one insists that treatments and hypotheses are tested - the good old fashioned "scientific method". Unfortunately no one's going to pay to do this properly as there is little profit in it.

Diagnosis-by-software seems like a fairly short step from today's diagnosis-by-lab-report. I certainly would rather be diagnosed by a real person who has the time to do a proper exam and maybe even think about it for a while.

And let's not forget that a lot of 'conventional' treatments have little or no evidence of efficacy:

http://forums.phoenixrising.me/index.php?threads/bmj-clinical-evidence.36588/

It comes down to what works. Some pharma works, some surgery works (quite a lot doesn't), and some natural treatments work. As far as I am concerned, what matters is what works.

Scientists can often convince people that a treatment works, based on flawed evidence.

And so can psychologists, can't they???

 

[GracieJ]

Am I the only person in the world with a low tolerance of audio or video presentations? I did not look too closely at this because I prefer written material and do better with it. Maybe it is because it is possible to read an article in less time than it would take to present it spoken?

I just felt tired looking at the list of presenters. Overload. It doesn't matter how good the information is in any "summit." One talk and I am done.

If there are transcripts, it would be great to read what these people have to say. Maybe I will look for a book or two, but NO THANKS to an e-mail barrage.

The argument over what constitutes "real" medicine makes me feel sad sometimes. Medicine is medicine. But any type of help offered any more is filled with its own dogma and lies. Ironically, it is the lies and deception in allopathic medicine that put me on the natural medicine path. Few "conventional medicine" remedies worked for me.

None of us like the mind-body misconception that we somehow caused our disease or committed the sin of "bringing it on ourselves." That just does not sit well with someone suffering for years, as if it were all needless.

Energy medicine, however, is still largely unexplored. It is an amazing and fascinating resource, mostly unexplained. It is okay for me to have a TENS unit and gain relief using it, but the same concepts applied with energy modalities are seen as woo-woo? I will keep woo-woo, thank you very much. I see things happen that are supposed to be impossible, so yes, I do keep an open ear to summits like these. You never know when a missing piece of your own puzzle will show up and bring relief.

No double-blind controlled study necessary when something works for you.

I just wish I could be around when much of today's medical beliefs are shown to be false, based more on greed than anything else, whether allopathic, holistic, or woo-woo.

 

[whodathunkit]

Am I the only person in the world with a low tolerance of audio or video presentations?

Nope. In addition to whatever health problems I have/had, I'm deaf. Video and audio only drives me CRAZY. When I'm tired it's much worse.

I don't know if he'll do it for this, but I remember Ken Wilber usually puts a lot of free stuff on his site. Maybe you can at least check for his part there.

No double-blind controlled study necessary when something works for you.

Amen, sistah. I'm lucky in my doctor because if I tell her something a little "out there" works for me she's always open ears. She might say something like "Hmmm, I've never heard of that before" or whatever ,but I never have to worry about being told it's all in my head.

 

[GracieJ]

@whodathunkit

Thank you! I will look for such sites. Always an insightful read. It sounds like this man has endured a lot.

I, too, have been very fortunate with doctors, once I quit seeing "mainstream" physicians.

It took the usual try everybody and everything for 14 years, as they scratched their heads and told me they just could not account for my symptoms. I was offered antidepressant therapy many times. Most of those doctors, to be fair, could see more but just could not figure it out.

Then I began seeing the two alternative doctors I have consulted over the years - now three - and I was believed and validated. Of these three, only one had a clue what to do with it. The other two, my current doctors when I consult anyone, are completely open to hearing my studying, and any reasonable suggestions I want to pursue, they help me pursue. If I had the money to do it, I could have them order any testing I could want. It is so nice, considering the horror stories found on this site.

 

[MeSci]

Am I the only person in the world with a low tolerance of audio or video presentations? I did not look too closely at this because I prefer written material and do better with it. Maybe it is because it is possible to read an article in less time than it would take to present it spoken?

I just felt tired looking at the list of presenters. Overload. It doesn't matter how good the information is in any "summit." One talk and I am done.

If there are transcripts, it would be great to read what these people have to say. Maybe I will look for a book or two, but NO THANKS to an e-mail barrage.

The argument over what constitutes "real" medicine makes me feel sad sometimes. Medicine is medicine. But any type of help offered any more is filled with its own dogma and lies. Ironically, it is the lies and deception in allopathic medicine that put me on the natural medicine path. Few "conventional medicine" remedies worked for me.

None of us like the mind-body misconception that we somehow caused our disease or committed the sin of "bringing it on ourselves." That just does not sit well with someone suffering for years, as if it were all needless.

Energy medicine, however, is still largely unexplored. It is an amazing and fascinating resource, mostly unexplained. It is okay for me to have a TENS unit and gain relief using it, but the same concepts applied with energy modalities are seen as woo-woo? I will keep woo-woo, thank you very much. I see things happen that are supposed to be impossible, so yes, I do keep an open ear to summits like these. You never know when a missing piece of your own puzzle will show up and bring relief.

No double-blind controlled study necessary when something works for you.

I just wish I could be around when much of today's medical beliefs are shown to be false, based more on greed than anything else, whether allopathic, holistic, or woo-woo.

I don't have time, patience or energy for video or audio either. I have too much to do. Audio and video for me are for mealtimes and evenings only, and then it really needs to be stuff that doesn't need stopping and starting because I am eating or washing up.

I guess what is 'woo woo' is a matter of opinion. For example, I believe in ghosts and telepathy, but I don't think they are supernatural - just something science hasn't worked out yet. I have good reasons to believe these things. I am a scientist, and think and observe very carefully.

I'm unhappy, however, when people dress up their particular brand of 'woo woo' in smily, shiny 'brand'-type packaging and try to make loads of money out of it, either upfront or deviously. I would take them more seriously if they used proper scientific language.

It could be that they have figured something out and view it as spiritual, or magic, and don't know scientific language, so will interpret it for others as spiritual or magic.

As they could equally be charlatans or deluded, I think I'll wait until we have something more tangible or solid before I try any of these things. I just don't have the time or the energy (sic) to try everything!

 

[GracieJ]

It comes down to what works. Some pharma works, some surgery works (quite a lot doesn't), and some natural treatments work. As far as I am concerned, what matters is what works.

Was in a big hurry yesterday. Just wanted to let you know I really like your thinking on this!

The key has to fit the lock.

 

[Jonathan Edwards]

But I think this would be a nightmare of a concept to actually research. For starters how do you scientifically validate that a person has a perfectionist attitude?

That is not what I am suggesting. I agree that is no good. But finding out what job people did before they were ill is pretty objective. There is no problem with bias or need for blinding because it would be historical fact. If three times as many PWME were airline pilots before getting ill than matched controls that would tend to indicate that pre-existing patterns of behaviour might be linked in some way to the disease. It would seem likely to be better evidence than asking people if they had childhood trauma.

But the key thing about science is that you do studies just as much to refute ideas as to corroborate them. If a study showed absolutely no difference in perfectionist type jobs then that would help lay that idea to rest. One should not be frightened of testing ideas one would prefer not to be true. I agree that it might not help that much in treatment but anything that clarifies the range of causal factors in the disease should be welcome.

 

[whodathunkit]

I was offered antidepressant therapy many times

SO MANY TIMES I can't even count. And after a couple bouts with them, I just kept telling the doctors the sides were intolerable in that they made me feel like I was a stranger in my own skin (plus anorgasmic, yawning, mono-eating, all kinds of weird crap) and no one believed me. Or I got the "Well, you just never tried the right antidepressant as prescribed by *ME*, little lady, heh heh heh" attitude. Like I said in another thread a couple days ago, they honestly seemed to think that their precious, special, magical touch would somehow change my physiology and the Universe so that anti-depressants were the cure-all for me. Which, incidentally, I found out from my Promethease report a couple months ago that I have the snps that mean I don't respond well at all to anti-depressants and should stay away from them.

The same thing happened to me with birth control pills, too. Every doctor I've seen in the last 20 years (except my current MD) wanted to put me on birth control pills for my female problems. Sides are intolerable on them, too, worse than anti-depressants. I blow up like a balloon within a couple weeks of starting them, plus hyper-hyper-hyper-HYPER irritability, hair and skin changes, etc. But each time I declined them, all the docs tried to dissuade me because I hadn't tried it with them. Or they just couldn't believe it was *that* bad and I was exaggerating, etc.

And aside from this, they didn't seem interested in exploring other options. If I refused to try something with them that I knew from experience was bad for me, if I refused to "perform" the nasty, life-altering side effects for their benefit so they could witness firsthand that I wasn't LYING to them, they had nothing else left in their bag of tricks (except removing a major organ for the female problems, and synthetic replacement hormones after the surgery). These experiences are largely what put me off mainstream medicine and medical doctors. But even when I was first trying these drugs, after I told the docs I couldn't take them any more, there were no other options. They didn't come right out and say it, but it was basically like it's the end of the line.

These experiences are largely what put me off mainstream medicine.

It comes down to what works. Some pharma works, some surgery works (quite a lot doesn't), and some natural treatments work. As far as I am concerned, what matters is what works.

Again, amen, Sistah! mainstream treatments if I think they will help me, especially for acute situations. There's no way I'm going to refuse a CT scan or MRI or antibiotics or surgery, etc., if I think they can save my life. A small stash of strong analgesics and prescription anti-anxiety meds reside in my medicine cabinet for emergencies, because sometimes nothing else will do. Haven't used either in over a year, but I want a few on hand always because they work. My doc gives me a small script every year because she trusts me and knows I don't abuse her trust. Also, big value in lab tests. Although I do prefer to go on my symptoms when trying new things and adjusting dosage, labs are useful to point us in the right therapy directions (especially values at the extreme ends of normal) as well as for showing progress or lack thereof with any therapy. Plus, it's motivating when you get good feedback from lab work after you've been working hard to change things.

But for long-haul situations (like many of us seem to be in here), it does seem that looking for the fundamental physiological causes of the dysfunctions and correcting them with more natural methods (primarily nutrition via diet and supps) might be a better way to go. JMHO.

 

[A.B.]

That is not what I am suggesting. I agree that is no good. But finding out what job people did before they were ill is pretty objective. There is no problem with bias or need for blinding because it would be historical fact. If three times as many PWME were airline pilots before getting ill than matched controls that would tend to indicate that pre-existing patterns of behaviour might be linked in some way to the disease. It would seem likely to be better evidence than asking people if they had childhood trauma.

But the key thing about science is that you do studies just as much to refute ideas as to corroborate them. If a study showed absolutely no difference in perfectionist type jobs then that would help lay that idea to rest. One should not be frightened of testing ideas one would prefer not to be true. I agree that it might not help that much in treatment but anything that clarifies the range of causal factors in the disease should be welcome.

Dr Byron Hyde said something about ME patients professions:

It is a fact that the majority of M.E. patients are not in high-stress occupations as the popular press frequently suggests, but are teachers, nurses, physicians, and other health care workers. This group represents those most closely related to infectious illness, frequent immunisations and those most frequently immunised.

The Clinical and Scientific Basis of ME Dr Byron Hyde p. 115

http://www.hfme.org/hydetextbookreview.htm



This article by him lists nurses and doctors, healthcare workers, teachers, book-keepers, secretarial workers, tellers as typical ME patients (fig. 51.4)

http://www.rme.nu/sites/rme.nu/files/51-Psychiatry_Evidence_Based-ppp.pdf

 

[MeSci]

That is not what I am suggesting. I agree that is no good. But finding out what job people did before they were ill is pretty objective. There is no problem with bias or need for blinding because it would be historical fact. If three times as many PWME were airline pilots before getting ill than matched controls that would tend to indicate that pre-existing patterns of behaviour might be linked in some way to the disease. It would seem likely to be better evidence than asking people if they had childhood trauma.

But the key thing about science is that you do studies just as much to refute ideas as to corroborate them. If a study showed absolutely no difference in perfectionist type jobs then that would help lay that idea to rest. One should not be frightened of testing ideas one would prefer not to be true. I agree that it might not help that much in treatment but anything that clarifies the range of causal factors in the disease should be welcome.

But please take into account the unfortunate hordes who are not in the job they want, having never had the chance due to caring roles, deprived background, illness, etc. Picture a high-achieving schoolgirl who left school early to escape a miserable home life, did mundane jobs for about 25 years and then fell ill just as she had started studying science with the Open University - still high-achieving. My jobs tell you nothing about me. Except perhaps the few freelance research contracts I managed to get before resorting to selling plants from home.

Sometimes wonder how I have any energy or hope left...