Discussion in 'General ME/CFS News' started by Firestormm, May 27, 2014.
how's your day been?
Not good, And you?
@Kina sorry to hear that, hope it improves. so so, ended ok'ish
i got one of those nigerian scam emails wanting me to
send loads of money to africa so i played along for a couple
of emails and now shes telling me im the love of her life
so i replied that id heard she'd been seeing other men and so
don't want to be her b/f anymore , literally only 3 short emails.
i think they've sussed im joking as their last email seemed a
little tongue in cheek. i probably shouldn't reply anyomore
as i don't know who they are but i know im good as long as
i don't click on any links. gave me a little giggle. last email
ive asked if they can give me some money instead as i'm
a bit short at the mo? ive not had a reply yet and will probably
not reply again anyway
"ME Miracle Cure Babe" .... Amanda Varty .. and her ...
Evangelical Charismatic ‘Life Church’ ... used to be called ... The.. ‘Abundant Life Church’
Abundant Life Church criticised over gun video
Church criticised over gun video
‘An American-style church in Bradford has been criticised for its use of controversial videos in promoting its events.
In one video, the Pastor of the Abundant Life Church on Wapping Lane is seen driving his luxury sports car and waving a fake gun.
The church says its methods are designed to make religion more appealing and bring it into the current century.
More than 2,000 people pack into the building each Sunday for a service which starts with 20 minutes of adrenalin-pumping rock gospel.
The Bradford church's charismatic pastor, Dewsbury-born Paul Scanlon told BBC One's Inside Out programme that it had to reach people and their promotional material was about being relevant.
Some of the organisation's video images include pastor Paul in a stylish Lexus car with an imitation machine pistol.
But Canon Derek Jackson of Bradford Cathedral said he was "shocked and distressed" and it was "not Christian to see a pastor with a gun and a high speed car."
According to the latest Charities Commission report the Abundant Life Church had a turnover of more than £1m, but that was nearly two years ago and the church is still growing.
The church uses the strong financial base to send a mission bus crewed by women into the city's red light district offering street prostitutes food, clothing and friendly faces aiming to persuade the prostitutes there is another way of life.
The organisation also runs a weekly breakfast club for the poor and homeless.
By helping the disadvantaged Abundant Life believes it is serving God as the gospel intended, but it all requires cash.'
I wouldn't say the only positions to take are either current scientific views versus literal interpretation of miraculous healings, but CFS is a wastebasket diagnosis and the world is brimming with scams and self-deceptions.
We have a right to be skeptical about talk of placebo effects when the current dominant form of psychobabble in the field of ME/CFS has failed to demonstrate any objectively measured recoveries in randomised controlled trials.
I think it was Carl Sagan who said: "Extraordinary claims require extraordinary evidence."
Those who believe in God may argue that healing miracles cannot be induced on demand or studied scientifically. However, we can explore other forms of context, such as the medical history of the patient, and the type of church this is.
All the talk of miracles, healings, and "resurrections from the dead" make me skeptical, as does the general tendency for evangelist churches to operate like a business with an eagerness to become the next megachurch.
Miracles can sound attractive to the desperate, but the higher the hopes the harsher the let down when it fails. Also if there is a spiritual or religious element to it, all the failed cases may feel guilty for not being worthy enough or whatever.
There's a difference between "not believing" and "disbelieving". Someone might have a strong belief that god does not exist, based on various factors. And someone else might not believe that god exists, such as due to a lack of evidence, while still not believing that he definitely does not exist.
One is a belief, and the other is a lack of belief. As an agnostic who has no idea if god(s) exist(s) or not, I don't disbelieve in gods, but I also don't believe in a god. I have seen and felt no evidence of his existence, nor heard of any convincing argument that he exists, but nor have I heard of any proof of his nonexistence.
I don't believe either way, and I am completely undecided on the matter. And I'm not bothered by that in the slightest!
Something else occurred to me. Throughout the history of Christianity, churches have depended on donations or sales. A church often needed a holy relic or stories of miracles to attract tourists who would part with their money. Holy relics were a big deal in medieval Christianity, and attracting pilgrims was important to the financial security of these churches. A lot of these "holy relics" were fake, made up, or gained their own mythos.
I'm not saying all stories of miracles are fabricated (some of course would be mis-attribution or self-delusion), but how do we know that modern stories of "miracles" are not just continuing a long tradition to attract church attendees and sales?
It's very simple.
Whatever the church you make sure they preach and practice Jesus' teachings in their entirety rather than picking and choosing according to their taste.
As regards money, Jesus teachings are quite clear on this point. When he sent out his apostles he said " You received without paying, give without pay" (Matthew 10:8). Amen.
This is very important because those ministers who truly have received healing and other gifts from God are those who give up everything and place themselves in total dependence on God who surely always provides for them. It's been like that throughout history and so is today and it's a solid criteria to discern what is from God and what isn't.
That doesn't follow. It assumes that illnesses are either physical or mental. They are a combination of both. Outside the West medicine understands this. ME is a physical illness but it can, and often does, have mental consequences. I also suspect that the physical is dominant at the beginning but the psychological component becomes more important as time goes on, "locking" them into a life with ME. Is it not at least possible that some people get to the point where it is this that is preventing their recovery and some kind of process/event/ therapy (religious or otherwise) is the trigger for their release? Just my theory why some people do get better from "miracle cures".
Chickadee9 wrote: "....It assumes that illnesses are either physical or mental. They are a combination of both."
Are they really?
That is a very popular meme these days, but most of the lifesaving advances in illness prevention over the centuries have come about through developments in public health, ie sanitation and clean water, and containing epidemics.
What, for example would be the mental/psychological component in cholera, smallpox, scarlet fever, diptheria, typhoid, mumps, measles, rubella, bubonic or pneumonic plague?
Chickadee9 wrote: "I also suspect that the physical is dominant at the beginning but the psychological component [in ME] becomes more important as time goes on, "locking" them into a life with ME."
How many people do you know with long term ME? And what on earth do you base your "suspicion" on?
I think that is an outrageous thing to suggest, and insulting. And has no basis whatsoever.
You assume that there is a "psychological componenent" in ME. Whereas many people who live with ME maintain that there is not ..... and some of those who are disparaging about the assumed "psychological component" are very familiar with holism, meditation, relaxation practices etc, which have made no difference to the severity of, or the course of ME illness.
I wasn't going to post on this thread again but I think I will.
This is what I believe. With or without a chronic illness, mental health can deteriorate at times. But with chronic illness this is a lot more likely. A lot of people on here seem to be really sensitive to mental health being associated with CFS. But let's remember the the brain is an organ. A very important one that needs a lot of nourishing just like the kidneys, liver and lungs. If you don't have a healthy mind/brain then how can you expect your body to be healthy. Most healthy people seem to take this theory on without any issue but on here a lot of people don't like it. Which makes sense due to the history of me/cfs and the way people have treated us.
I personally believe that these things can help cfs and other illnesses, even degenerative illnesses. I once saw a video of a man who had leukemia and he was seriously ill. I'm pretty sure he was terminal but he read tons of books on spontaneous remission and so on. He was extremely fit and was positive that he was going to recover and his body was not in any sort of state for him to be hiking and hanging onto tree logs yet he was. Anyway he died a short time later. If I find the video then I will post it. But it just goes to show that the mind is really powerful and I do believe that placebos or miracle healings can help. And thats all that matters in my opinion.
Just found the video
We could dwell on the fact that he died. Or we could be happy that his last month's were of him happy and normal and walking around doing as much as he could even though neither his bloods nor body correlated with that.
There is a difference between the mind and the brain, no? The brain is a physical organ. Either you have a neurological disease or you don't.
Scepticism about 'miracle cures' has nothing to do with any sort of "sensitivity" about 'CFS' and mental health. That’s just an assumption that keeps being repeated.
The eronneous idea that people who say that ME does not have a ‘psychological component’ are frightened of being labelled with a mental health condition, or are “stigmatising” people who do have a mental health condition…. that idea originated from the Wessely School, in particular from UK psychiatrist Michael Sharpe….. and has been repeated ad nauseum. Despite it not being true.
Some people who reject the idea of the supposed “psychological component” in ME are former mental health professionals who have actually trained in CBT.
I worked in holism, had very strict training relating to not diagnosing or making unrealistic claims. I was around the mindbody world for decades, and encountered huge amounts of BS about mindbody, widespread bandwagon thinking, grandiose claims, deceptive advertising (such as in Lightning Process) and yes, supposed "Miracle Cures" that were absolutely no such thing, but accepted as such by hopeful or gullible people.
Louise Hay (for example), the Positive Affirmations Goddess who kick-started the subsequently mainstream popular mindbody theory movement, did not 'Create' her own life as she claimed to have done. Her Business/Publishing Manager created it.
Louise Hay started her ‘Positive Affirmation’ Seminars in Los Angeles in the early 1980’s by running seminars for early AIDS sufferers. Louise told them that Positive Affirmations and a will to live would save them. It didn’t. They died.
Now HIV/AIDS is treatable.
I wasn’t expecting to comment on this thread, because I couldn’t really relate to much of the original discussion. A number of interesting posts were made however, so I decided to watch it. My own philosophy on topics like this is pretty much, “to each their own”, and good for anybody that manages to improve their health in whatever way works for them. I couldn’t see that this woman, or the group sponsoring her story were going to significantly affect me or the ME/CFS community.
I’m commenting however, because I really appreciate and am in agreement with the posts by Chickadee9 and Ambrosia_Angel. I myself believe that whatever affects us physically is going to affect us mentally and/or emotionally to one degree or another. I also believe the reverse is true, that thoughts and emotions affect us physically.
As such, it’s not a big leap for me to realize my illness is always affecting me emotionally, mentally, psychologically, spiritually, etc. So a big part of my daily life is to try to be aware when my feelings of being swamped begins to weigh too heavily on me. And if I see that happening, I begin to use a repertoire of energetic and spiritual tools to keep myself in balance.
Despite my best efforts however, I believe that after decades of struggle, there are patterns within myself that are not necessarily in alignment with optimal health. It’s gotten to the point where I can hardly imagine being healthy again (though I continue to try). Some would consider this a psychological problem. Others who believe visualization and/or imagination can accomplish ANYTHING, would likely consider it in a similar vein.
So do I have psychological problems? Perhaps, especially if judged by our infallible medical and psychological professions. But I feel quite confident that if I were to regain my physical health, any internal patterns inconducive to good health would resolve in quick order. Remove the cause of the inner stress, and resolution follows. In the mean time, if somebody wants to label my “sickness behavior” in whatever judgmental terms they may come up with, I’ll consider it their problem.
Helping sick people with symptoms, to feel more comfortable, to maintain a human contact whilst severely sick ... these are some of the best practices of 'holistic' type therapies......
But in my view, and experience, the whole 'Mindbody' theory and bandwaggon perpetuation of unrealistic claims, and in particular the mindless meme insistance that "all illnesses have a psychological component"...... has developed into a cultural tyranny of physically sick people..... not least due to 'holism' and mindbody theory having become a multibillion dollar global industry
Just to explain where I started on this is that, having had ME a long time, I know others with ME who have improved/recovered as a result of what several on here would immediately dismiss as nonsense psychological techniques. One was LP, another was something called EFT. It is very easy - and glib - to say they never had ME but certainly in the case of the second person who I knew for many years while she was very ill she certainly had all the symptoms of ME. I'm just trying to find an explanation. To me these techniques make no sense but, in some cases, they do seem to work. Your mental state affects your physical well-being and vice versa. When my ME was very bad a little bit of mental effort would wipe me out physically and minimal physical activity would knock me out mentally. ME is a neurological illness. Is it unreasonable to conclude that it has both physical and mental effects on us? I don't think so. I can understand because of the history of ME and the dominance of the psychs why people shy away from any mention of a mental component. But we are a whole person with a body, brain and emotions that are all interwoven in ways we unfortunately don't yet understand.
A distinction should be made between a "psychological component" and psychological factors. ME/CFS affects neurocognitive function and/or has a heavy psychological burden. To some people that may indicate a "psychological component" and may be the way they use the term for most diseases which cause suffering. The existence of a psychological component does not automatically justify psychobabble about causal or perpetuating factors.
I generally agree with Wildcat's skepticism about the "all illnesses have a psychological component" meme. There are many diseases which have no significant "psychological component", except occasional coping issues in some patients. The stigma of mental illness etc are lazy explanations for the sensitivity. The reason why many patients appear 'sensitive' to the issue is because when we are diagnosed with either ME or CFS, there is an automatic assumption that by default we must be somehow largely responsible for ongoing illness and/or cannot cope properly without outside help. Guilty by association with prevailing psychobabble, and guilty until proven innocent in a kangaroo court.
Many ME/CFS patients are adversely affected by significant stressors, even if the mechanism is organic. The existence of post-exertional vulnerabilities opens up the possibility of psychological factors affecting symptoms, but unless patients are struggling to cope or manage their illness in ways which can be significantly helped with interventions, there should not be an automatic presumption that such interventions are necessary or would be useful.
I think the best that most patients can hope for with meditation, relaxation, mindbody techniques, etc, is to improve coping and minimize the effects of post-exertional vulnerabilities. Unless you have an illness which can be successfully treated with these interventions, they are not going to have a significant impact on the underlying disease.
As Wildcat said, there is a dark side to the optimistic mindbody movement. I found it to be false hope and realized that whatever illness I have is beyond the understanding of the mindbody movement and beyond my own my ability to recover using willpower. Talk of energy fields etc may be useful when conducting certain exercises, but are old-world models of subjective explorations of the body (a body which essentially follows the laws of biology and physics). There are things yet undiscovered about how our body functions, but I don't think the old-world models should be taken too literally.
You make some good points biophile. I was wrong to say ALL illnesses have a mental component. As to the use of the word "component" I define it more broadly than you do. "Factors" if you prefer. The point is that psychological factors can play a part in ME, as a result of having a terrible physical illness. As I said, I have known personally people who have much improved by use of techniques that make no sense to me but I can't deny the existence of what I see. I am merely groping for an explanation and the only one I can come up with is that, in the case of SOME people with ME, the psych factors become dominant over time and act to perpetuate symptoms, a cycle that can be broken by one of these neuro-linguistic-type interventions. Just my theory as I said before.
@Wildcat, adding to your thoughts:
How about "all mental illnesses have a biological component"? Once you buy into the BPS paradigm, then why shouldn't we treat the reasoning the other way around?
There is no doubt a cognitive/thought component to physical illness. If I break a finger, I am going to be in pain, its going to modify my thinking and behaviour. Yet I would not want to be treated for it with psychotherapy or even an SSRI, though I think the right kind of meditation could reduce pain levels. Many physical disorders have minimal cognitive aspects.
I suspect that there are thought disorders, aberrant belief systems, that have only minimal physical components, which are altered physical memories leading to altered behaviour. Cult brainwashing comes to mind here.
The issue is not about whether there is a relationship between cognitive and the body. (I am not using mental because I am a monist, there is only brain unless you can prove the existence of mind.) The issue is about relevance to recovery or treatment.
The general argument I see misused repeatedly, is something like this: it might be useful in some cases, therefore its useful in all cases. Well it might be useful to put petrol/gas in a car's tank if it wont go, but it wont be useful in all cases. If you need a new battery or spark plugs, or need to fix the hole in gas tank, it wont help.
It is increasingly becoming clear that many claims in the published scientific literature of cognitive treatments assisting recovery of bodily ailments are bogus. Claim after claim has been disproved.
On the other hand there are many cases of "mental" disorders that have been cured with vitamin B1 or other simple physical measures. Even antibiotics can cure "mental" disorders if the cause is bacterial infection etc.
There is also no doubt that many mind-body approaches might assist people with coping, and so improve quality of life. This is a very different claim though.
There is some reason to believe that reducing stress might assist recovery slightly, even with a broken bone. Yet, again, its not what you would do to treat a broken bone.
I come back to my original point. I know personally people who have benefited from these techniques. I am simply trying to understand why being naturally sceptical. I never said Wildcat that these techniques would be useful in all cases---I deliberately referred to SOME people with ME benefiting from them. My theory suggests that some PWME get to a certain point in their illness, well after the original bout, where they may be helped to recover. SOME! Does anyone have an alternative theory, other than to say glibly that these people by definition never had ME in the first place?
Re relevance to treatment I agree with you Wildcat on the coping aspect. It seems to me that being believed, being given time by a therapist, relating to that person and feeling you are doing something to overcome your illness have a distinct value and may shade over into a step function improvement as a result, overlapping with my original point.
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