The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

Another hypnotist claims he can cure ME??? (Steven Blake)

Discussion in 'General ME/CFS Discussion' started by Boule de feu, Mar 27, 2012.

  1. Kina

    Kina Moderation Team Lead

    Ontario, Canada
    I think 4 people out of millions is not statistically significant. Perhaps certain kinds of people seek out hypnotherapy -- there's something you could look at.

    I think you are mistaking members wanting to add what they know and think as lack of support and encouragement. I hope you have learned something from your short visit here. We are a tough crowd.
    merylg, Mij, garcia and 2 others like this.
  2. Bob


    England (south coast)
    Yes, definitely naive, and also medically ill-informed.

    If I went onto a Parkinson's disease patient forum, and told them that I'd cured some Parkinson's disease patients after a couple of sessions of faith healing (for example), then I hope I'd be quickly booted off the forum.

    Let's be clear that anecdotal reports from a single therapist (in this case, without medical knowledge, or training), are not evidence for a treatment or cure.
    I'm sure that if Hypnosis was a successful treatment for MS, Parkinson's disease, cerebral palsy, etc., then we would have heard about it by now, and further research would have been carried out.

    Maybe you have helped some people who came to see you, but that doesn't mean that they either had ME, or that your intervention improved the physical symptoms.
    merylg, SOC, Sushi and 1 other person like this.
  3. PhoenixDown

    PhoenixDown Senior Member

    But not everyone's biology is identical. Their immune system reaction perhaps?

    PS: Thanks for turning up, at least you made the effort.
  4. Sigh
    Our mind can have effects on our bodies, but not in way many seem to think in your line of work/thought.
    For instance, you can mentally influence your heart rate, I knew that LONG before the medicla establishment would admit it (from shooters and martial artists: concentration reducing heart rate)
    that's not mysticism, it's quite probable evolution, enabling us to be better hunters (more calm, relaxed, better your aim is and thus, gain food).
    You cannot control the actual heart or heart rate itself though with such, or folk would instantly drop dead of "broken hearts". Note your mental state, triggers some other effect, it's not you mentally dictating a set heart rate or such.

    Bodily reactions ot mental states/orders are (to best of knowledge) the result of evolutionary feedback/needs
    we can tap into such things by meditation, or thinking certian thoughts/ways (usch as aggression for a burst of adrenal for physical demands like weight lifting)
    helping folk to be calm, is useful it's not a "cure".
    problem with M.E. is that it's so ghastly unpleasant, being "calm" is damn near impossible.
    Helping folk to relax is beneficial, you overstate/wrongly consider the mental power/state/ability on such issues. IMHO.

    And hay fever, no you misinterpret the fact that there are BILLIONS of Human Beings, with a vast, bewildering array of *physical* life experiences and genetic differences.
    This leads to possible combinations of things, that can lead to many possible effects, in absolutely mind boggling numbers!
    I don't think anyone (or rather, many super computers) could possibly work out the possible number of permutations of possible reactions, it's that vast.
    there's about 70 TRILLION possible genetic combinations from just two (human) bog standard, everyday, parents! 23^2 (one parent's chromasomes, and they are in pairs hence it's squared), then you factor in the other parent so it's (23^2)^2 = 70,368,744,177,664!!!
    Then add in mutations...and God knows what else...

    Thus, you will get broad swathes of people reactive to common powerful reactive materials that are long term (that is evolutionary) parts of our environment
    when you had the incredibly potent and "unnatural" (used in correct sense) chemicals we can create, you add even more potential issues.
    Over cleanliness, the extremely powerful immune modulating effects of organophosphates etc may all add up icnreased allergy problems today. As well as, the fact ordinary folk KNOW about such things now, when before they didn't have access to such info!
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

    I don't think it is a matter of support or lack of, but rather being scientifically precise when interacting with patients who are very ill and have tried most every approach there is. Many sincere people share their ideas on methods for improving the health of ME/CFS patients and most, unfortunately, have taken a superficial or simplistic approach to this extremely complex and debilitating disease, or they have implied that psychological interventions would be helpful--such interventions have been extensively tested and come up lacking, to say the least!

    This is what people are reacting to--not to your ideas or intentions personally. Members are very sensitive because it is so critical that this disease be recognized as the very serious (and life-threatening) physical illness it is. Our lives depend on this.

    Please don't go away feeling that you have been attacked. I think many of us are simply saying that it would be good to research this illness before commenting on how to help those of us suffering from it.

    merylg, taniaaust1, Bob and 2 others like this.
  6. Snow Leopard

    Snow Leopard Hibernating

    South Australia
    It means the same limited testing was done, rather than ME or CFS specific testing. You can do the same body of testing for an MS patient and you will also find nothing wrong.

    I know you have good intentions, but anecdotal claims aren't proof of anything. I have known quite a few patients who at various points claimed they were making great recoveries from various complementary therapies. Of course they were just being optimistic, they are still as ill as they ever were.

    If you conducted a formal RCT and demonstrated significant improvements from baseline in terms of actometer results, neuropsychiatric testing or repeat exercise testing at a reasonable follow up period (eg 6 months), then we'd definitely be interested. Otherwise: extraordinary claims require extraordinary evidence.
    merylg, Sushi, L'engle and 5 others like this.
  7. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    Hi Snow Leopard, no, never, nada ... well, maybe sometimes. Okay, so quite often! :aghhh: Its about hope and positive thinking. We often do think positively, despite what some people think. Its just that reality doesn't care what we think. We are either on a path to recovery or not, and our wishes have nothing to do with that. That doesn't stop us from hoping. Something I have said quite often, I can survive without a lot of things, but not without hope.

    Bye, Alex
    L'engle, Valentijn, Bob and 1 other person like this.
  8. Snow Leopard

    Snow Leopard Hibernating

    South Australia
    Most ME / CFS patients (or for that matter, patients with any disease) are extremely hopeful. That's just how humans are built. ;)
  9. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    One of the things that has to be taken into account in cures is the CFS and ME misdiagnosis rate. Its probably in the vicinity of 40%, though I have seen figures from 10% (strict ME) to 70% (waffly imprecise CFS). Take 100 CFS patients. If 40% are misdiagnosed, thats 40% who can be potentiall helped with all sorts of things that do not work for ME. If those 40 have 20 partial remissions, and 20 full cures, then anecdotal evidence of those who recover or partially recover will abound, and spread through the internet.

    To be realistic a cure would have to work on, for example, 100 consecutive well defined patients (ICC, CCC, Ramsay etc.) with a success rate that is very impressive.

    If patients are not strictly defined anything under 40% is potential bias. What did PACE get? Not 40%. In fact we do not know, as recovery data is not published - but the improvement data alone is pretty bad, and a big chunk of that seemed to be a background improvement rate that could have been due to misdiagnosis anyway.

    All this is without touching on additional confounds and bias like the uselessness of subjective improvement.

    The LP process has been reported, anecdotally, to result in at least one patient convinced they had recovered during a very severe relapse. Thats a cautionary note. Real recovery can be objectively measured to a great extent.

    Bye, Alex
    merylg, L'engle and Bob like this.
  10. Hanna

    Hanna Senior Member

    Jerusalem, Israel
    I just want to report my personnal experience with hypnosis. I have been doing sessions for slightly more than a year with a MD trained in hypnosis. I have been diagnosed with ME/CFS in 1998 and was in a wheelchair (for mobility outside the house) in June 2011 when I started the "treatment". I still need the same wheelchair when I go out. I didn't notice any major change in my level of functioning. Just use the hypno tool for relaxing, when it is possible. Hypnosis didn't help me with most of my symptoms (high level of pain, hyperacusia, very low stamina, OI, arrythmia, MCS and allergies etc...). I am sure that the very low impact on the disease is not linked to my inability to relax and get in the transe (sorry if my English is a little basic) nor give any credit to the practitionner, but the reality is that nothing has changed after one year of sessions (and exercices).
    merylg, Shell, Valentijn and 2 others like this.
  11. taniaaust1


    Sth Australia
    I have ME/CFS.. Fatigue is my fifth worst symptom of the disorder (and pain is even further out on my symptom list) as other symptoms tend to affect me far worst esp the ones caused by the low blood volume this illness has given me.

    You are wrong in saying that tests cant find anything wrong with us. Those who have ME (not the general CFS group) have many abnormalities with show up on tests.. eg Thou there is MANY more abnormalities common in ME patients, I have the following known ME abnormalities
    *Postive Rombergs test (for more on that see's_test .. a postive rombergs is indicative of issues in the dorsal columns of the spinal cord). Note that with several who died from ME.. altopsies showed they had abnormalities in the dorsal area.
    *abnormal EEGs (abnormal brain wave reactions. ME carries a couple of different abnormalities in these)
    * abnormal cortisol (out of normal range low)
    * abnormal testosterone (low) (that one hasnt been talked about being a ME abnormality but so many people with ME on this site have it that I think it must be an ME issue)
    * abnormal nor adrenaline so high the lab thought 3 of my tests were errors (high... note it goes high due to trying to keep my body in homoeostatis due to another condition I have that being low blood volume and postural orthostatic tachycardia syndrome (POTS)
    * POTS is an extremely common abnormality in ME maybe half or more ME patients have this. My nor adrenaline goes up to make my heart beat faster when Im that I get enough blood to my brain. Ive been unconcious (according to others) up to 5mins due to lack of blood to my brain, on occassions others have rung ambulances.
    * I also have orthostatic hypertension (it can go up to 170/138 when I stand but is very low when im laying 80/59). Dr David Bell a well known ME specialist finds this issue in many his ME patients.
    * no iron storage thou I eat meat 2-3 times per day due to craving it (my CFS specialist said the no iron storage is a common thing he finds in his ME patients...note.. its just my iron storage which is an issue as I keep my normal blood level up due to eatting meat so often
    * I have blood test results which some specialists would say indicate chronic infection.. (my white blood cell count usually sits on the border of low).
    * abnormal neurological signs when I ME crash.. eg hyperreflexia (abnormal knee reflexes etc), unequal pupils when I crash
    * Abnormality of my D .. (having normal supplementation made my levels go even lower.. I had to be on for a very long time 3 times normal supplementation amount or more..I was on mega doses for a while from hospital etc).
    * IBS-C due to the ME which then ended up prolapsing my bowel
    * I also have circardian rhythm disorder (all my hormones cycle wrongly) delayed sleep phase syndrome and non-24hr sleep wake syndrome (which are now known to be neurological disorders so no longer come under mental health catagories). These issues shouldnt be confused with the common issue of insomina.
    * 2 leaky heart valves which are usually indicative of a Patent Foramen Ovale (PFO) (hole in heart which opens up at times.. some people are born with these but in my case I wasnt as the leaky valves didnt show up on 2 previous tests and just my last one.. so I must of developed this due to ME. Dr Cheney (famous ME specialist) finds PFOs or dystolic dysfunction if tested for, in almost all in his ME patients.

    Note I havent had many of the tests in which ME abnormalities may be found or otherwise I'd have
    more on this list. Anyway.. I just wanted you to be aware that if you read the canadian ME/CFS document.. you will find that there are A LOT of abnormalities in ME if doctors know what to look for, so what tests to be running. ME patients DO HAVE abnormalities (and finding some of the common ME abnormalities helps to support that person has been correctly diagnosed and isnt a misdiagnoses).

    I do accept that you may be able to help some CFS patients if their issues are anxiety or stressed based.. but for those of us who have immune abnormalities and have ME.. thou there would be areas you may be able to help eg pain.. I'd think that it was be very hard to "cure" many of us (I had severe EBV and still get outbreaks of reactiviting viruses.. which support the recent study that a subgroup of ME/CFS people have an abnormal immune system). Do you really think you could fix my ME by fixing all those areas Ive got abnormalities appearing in and more? (as I said.. pain and fatigue are not the ME issues which bother me a lot, other symptoms fair worst.. I dont even have fatigue or pain right now but are prevented from doing things due to the postural orthostatic tachycardia syndrome).

    If you think that people at this site have given you a hard time.. its cause many of us do have abnormalities etc and MANY more symptoms then pain and fatigue (I get sick of hearing those words in relation to ME as they are some of my least concerns.. my main concern when I go out is if I will end up on the ground collapsed or even unconscious.... so when we hear someone say they can fix us.. it dont sound likely. But yes their will be some who dont have what I and many others here dont have which you may well be able to fix.

    Its exercise or being upright which are the two huge trigger things for my illness (so I live a life with careful pacing (a government paid support worker helps me to stay below my limits).. also with heat avoidance as that can set off the ME POTS and cause me to pass out. I fyou are doing hypnosis to make people pay more attention to their bodies so they dont over do things are crash.. for many of us that couldnt occur as in life unless one has another to help one by doing things (eg all my dishes are done for me etc).. many have ME so badly that without help there is no way we can even stay below the limits we need to to avoid a crash or worsening of our health issues (all of the health issues.. I have over 90 different symptoms and abnormalities with this disorder).

    So please dont relate this illness to just being able to fix some peoples fatigue and pain..... its almost offensive to those of us who have severe dysfunctions eg autonomic dysfunction so bad that our bodies cant regulate things like our blood volume, heart, BP and do things like proper bowel persistalis any more (my body on so many levels is in a complete break down state with my heart eg leaking heart valves, being now affected by the ME). Note.. Im only in my early 40s (developed ME while young, in my mid 20s). I are glad thou if you are able to help "some" who have been lumped into a CFS group in which consists people with all kinds of different things. If you have never worked on a CFS patient who had some abnormal test results showing up ME abnormalities, it is quite possible you have never yet worked on a ME patient.

    I thou ARE thinking about trialing hypnosis for my sleep issues thou I dont know if it would help due to my sleep issue being caused circardian issues and by also hormonal issue eg melatonin deficiency . I certainly arent against hypnosis and have had that therapy in the past for another issue.. 6 sessions of it (post natal depression and issues around that.. Hypnosis did work very good for that!). My sleep issue changes at times.. may be very bad for many months then get ok where Im not having to take many drugs for sleep.. Ive no idea why things change (it isnt related to how much stress is in my life at the time).
    merylg and Valentijn like this.
  12. Steven Blake

    Steven Blake

    Thanks for that. To carry out rigorous trials you have to have sufficient numbers of people. I'm in catch 22. I have spent a lot of time and money I didn't have getting this far - hence my frustration.
    taniaaust1 likes this.
  13. arx

    arx Senior Member

    Hi all,

    I am not replying to someone in particular but I would like to share my views,which have been built from experience and understanding.

    Things like this(yoga,meditation,hypnosis,etc.) can help change the mind's outlook to things in life. Acceptance,patience,relaxation and stress management can be cultivated through such things. These qualities are beautiful to have. Many things are in the head and many things are NOT in one's head.

    Unfortunately, these things cannot repair the body.If the problem is in the mind, these things can make a tremendous difference. They cannot reverse neurological damage (which is perceived to be IAIYH by many doctors) and other body damage.
    The mind simply does not have that much power.
    To those who are very particular, yes, mind can alter body reactions(neurotrasmitters,heart rate,etc.). But mind cannot repair spinal cord and brain damage. Positive thinking can change your outlook, but it cannot give you 5000 mcg of B12 and other 15 cofactors needed for reversing neurological damage everyday for the next 2 years. Mind has limits.

    The tragedy is that many symptoms are regarded as psychological. IAIYH. I am talking about myself here. I have a self-suspected b12 deficiency affecting my spine and brain. Now when my brain is affected, obviously I will have mental and cognitive issues. Firstly I was not diagnosed, my blood work was not even considered by many. Unfortunately men of insight, even with great achievements and a number of medical degrees lack such simple insight. I was told by many that why was I responding like this, why was I sitting like this, why were my expressions so blank. Many mental mechanisms which work in the other will NOT work for me, no matter how hard I try,and I have. Those men of academic insight failed to see that whatever I wasn't doing then was my inability to do them, indicating that those were my symptoms and subsequent neurological damage. My physical symptoms were regarded as hallucinations and therefore,not even considered. My lack of energy, which now as I see is purely neurological malfunctioning cannot simply be cured by persistent motivation and lectures from others.

    Inexperienced people rely on positive thinking and that it can move barriers. But they are inexperienced. While listening to them say these things ,I really want to give them a tight slap.

    Also, I would like to hear the story of someone who has suffered form ME/CFS/ in my case, B12 deficiency. I would like to see if he/she has been cured by these practices or not. I believe experience and imagination(from someone claiming and theorizing) as two very different things. No amount of imagination can come close to the truth of someone's experience. I think this is the reason why many symptoms and problems are regarded as IAIYH, people are sent to psych wards and dosed up on antipsychotics and anxiolytic drugs, spending ther lives labelled by a mental illness,while in TRUTH what they are actually suffering from is something purely neurological/physical or broadly speaking, body damage and NOT psychological/mind damage.

    With my health troubles,I think that 15 to 20 percent is the mind's role and how it views things(making mountains out of a molehill and vice versa) and the other 85 to 80 percent is the actual bodily damage. That bodily damage also compromises mental functioning(especially where the brain has been affected). Mental devices can bring about positive changes, and view huge problems as tiny problems, and the ability to handle things. Life management devices should not be confused with curing devices. At the same time, it is good to use such devices for healing the mental/psychological damage. But overrating the mind to heal actual body damage is probably not a good idea.
    merylg likes this.
  14. taniaaust1


    Sth Australia
    It would depend on what you are trying to treat with hypnosis I guess.. Have you fixed any MS patients and got them back to able to work? If u did hypnosis on a bedridden cancer patient.. are you going to get those back to work?

    Im not saying hypnosis dont work.. Im just saying it would all depend on what is wrong with the patient.. what systems are affected, what illness one has. One cant fix every illness with hypnosis.... and yes some who have so called "CFS" you would be able to fix. Im not doubting that. Also make sure you are "fixing" them objectively (based on whether they are able to do MORE things in life eg get back to work) then "subjectively" (which is just "believing" one is getting better when in fact one really isnt and isnt able to do more and still leading a very restrictive life).

    A patient isnt cured by feeling better.. but rather a patient is cured by able to be leading a normal life again without restrictions everywhere due to they arent actually well. (I have a CFS sister who often convinces herself she's doing better.. but if I heavy question her.. I find out she had to be helped back to her car (half carried) as she last week had an incident where she couldnt walk back from the school gate after going to there from her car. So dont be fooled by patients just saying "they feel better". My own CFS specialist thought I'd recovered after I told him "Ive been feeling good" .. but I was still having collapses all over the place (he didnt ask me about those, so I hadnt mentioned them including a stranding I had after a collapse). Feeling better can mean so many different things other then one is well.
    merylg, Valentijn and heapsreal like this.
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

    australia (brisbane)
    I personally think you are getting cfs/me mixed up with burn out type of situation. If your treatment worked for cfs/me then it would work for HIV and other immune and auto immune conditions.

    One problem with cfs/me is that there is a high percentage of people wrongly diagnosed with cfs/me, i have seen it mentioned as high as 30% especially in doctors not really familiar with the condition.

    The cfs/me community have been badly burnt by the the psychological communities with their treatments as well as other mind/positive thinking type treatments. Many have spent alot of money on things like the Lightening process without much successs at all. There always seem to be an answer if the treatment doesnt work eg blamming the patient as they didnt do it properly or they didnt take it seriously.

    We dont really know you, but we understand that you maybe sincere and want to help, but you seem to lack alot of knowledge on cfs/me as well as the history behind it. Oslers Web is a good book explaining the politics that we have had to go through, showing how little research has been put into cfs/me and how health authorities just wanted to flick it to the pscyhobabblers as it wasnt a real disease. There is alot of research out there showing infection and immune dysfunction going on thatthe psychobabblers choose to ignore so they can keep pushing their positive thinking CBT type treatments.

    merylg and Bob like this.
  16. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    Hi heapsreal, misdiagnosis rates vary from 10% to 70%. One so-called "expert" has a misdiagnosis rate of 50%. Look up the letters section of the BMJ, 2000 (I forget which edition).

    The other issue is this. Lets presume that the hyponosis does benefit a subset of patients. Then there is still something wrong with the theory. The notion of an unconcious is outdated. The unconscious is just the majority of the brain we are unaware of, and maybe those parts we are dimly aware of. Even hypnotic suggestion has limitations on the impact it can have on the brain, at least directly.

    The whole hypnosis claim was made by Charcot in the 19th century. He thought that hysteria, which was one term for medically unexplained disease, was a mental phenomenon because he could induce similar states in patients with hypnosis. Note, not cure, induce. He then demonstrated that to all and sundry, including Freud. In the mid 20th century many doctors went back and rediagnosed those patients based on detailed case histories. The diagnosis included a lot of epilepsy.

    This all started due to the observation that many people displayed bizarre symptoms after physical trauma. Some cases had maybe a mild bump on the head, or no visible bump, so it could possibly have been head injury. :thumbdown: Therefore Charcot jumped to the conclusion that mental trauma could also induce hysteria. The irony is that Charcot got it right in his earlier career when he said he thought these patients had brain lesions that simply could not be detected.

    To Steven, may I suggest you look for patient groups willing to participate locally, for free, as part of a controlled trial, In addition, may I suggest a similar sized control group, diagnosis using high quality criteria (the patients can probably fill in a checklist criteria with their doctor's help). In addition, have a second group that you are not trying to cure but just make feel better using hypnosis. You will need local support in any case to get patients. I suggest a second treatment group because I think its very likely you improve mood without improving outcome, though I do not doubt outcome can be improved in many misdiagnosed patients. In addition, you really need to check their diagnoses to be sure they have been thoroughly diagnosed. Someone simply saying they have ME is not enough for a controlled trial. I think it is highly likely you can benefit some with idiopathic fatigue. I think that is where the confusion is coming from.

    I know lots of CFS patients who have tried hypnosis, including me. Its been used on patients like us for well over a century. There is no record of success. However, I do think that hypnosis can be used to assist in management of the illness, an area which is massively unexplored.

    Bye, Alex
    merylg likes this.
  17. ukxmrv

    ukxmrv Senior Member

    When I was a member of a London group we were approached by a healer who thought she could help PWME. The deal was that 10 or 12 of us would go to see her for x number of sessions and then report back our experiences.

    It didn't have any long term or obvious effect on any of us, although I do believe that she was genuinely trying to help and it hadn't been an attempted con. The healer was quite honest about how disappointed she was and unlike other alternative practitioners I saw, didn't try to blame the patient.

    This was a long time ago and probably pre-CFS or before CFS became the common dx in the UK.

    I think that Steven has probably got into a situation where he really does want to help, he's met some patients who genuinely think that they have CFS or ME (because some people with CF are being told by doctors here that they have it) and then they are improved of whatever it is that they have.

    The question would be why would someone with fatigue be improved by hypnosis ? and I'm at a loss to explain that. If this is true of a large group of people with fatigue then it is wonderful for them and should be available to all in that group. People with burn out for example would love to be cured with hypnotherapy if it works.

    This would be useful to all the people with these conditions who have been dx'ed with CFS and all of those with the other conditions.

    What I have seen with other ME "cures" like the Lightning Process is that people can be convinced that they are better and they aren't, OR , people with emotional / stress / burnout problems are helped but still believe that they had ME.

    Whatever it is that Stephen does needs further investigation by him (and maybe with the help of some locals groups of CF) to see if there is an effect and to learn which group is helped. Sadly, I don't think it will be PWME.

    I'd hate to see PWME involved in this unless there was a way people could participate without harm and without having the terrible disappointment of it not working.
    merylg and Bob like this.
  18. SOC


    Fatigue is a mushily defined symptom. People with burn-out apathy can describe their feeling as fatigue when what they feel is the inability to get motivated to do anything. Major depressive disorder has a similar type of fatigue as one of the symptoms.

    So when mood or motivation issues are called fatigue, I can see how hypnosis might alter the sense of fatigue -- at least partially by relabeling in the mind. I think this is the basis of a lot of the push-through and think differently schools of ME/CFS psychotherapy. It's based on the so-called mood-based "fatigue", not the fatigue we experience.

    What we have, imo, is better called exhaustion. We literally do not have the energy. Hypnosis or psychotherapy is not going to change that physical reality. It isn't going to change immune disorders, either, or clear chronic infections.
    merylg, Sushi, L'engle and 2 others like this.
  19. My Mum was a healer, for real, never advertized it, never took money, hated any hoopla
    Really could help folk, waaaay back afore both of us got too ill she helped me a bit now and then (not a gift you use frivilously and she didn't even understand why her hands where getting hot on me as she didn't know, or me! how bad M.E. is. her hands would get this unearthly heat in them when you were sick or on injured parts)

    yeah yeah I know, I love logic and science and just in this very thread, gave someone a bit of a redress, I know, seems hypocritical :p
    just I've seen lot of weird stuff with external evidence, and I won't deny it.
    just dont' claim to understand it and realize I may be wrong...kind of hard to dispute x-rays and independant witnesses though.
    Mum literally saved folks' lives with her healing, one woman she knew/felt she needed aid urgently told her where in her body, Mum really rushed her to see a doctor, lady got diagnosed with cancer. No symptoms, docs were astounded she had come forward, as she'd have been beyond hope in only a few weeks more.
    Doesn't mean all healers are genuine (lot of charlatans out there, sigh...but also some decent and a few truly gifted ones),
    nor does it mean that there isn't some other logical explanation even if it's one we don't as yet understand *shrug*
    Mysteries are fascinating! :)

    I know many won't believe such stuff but hey, you never know....I even have to admit the possibility the psychobbablers maybe right....nothing is certain, every day we have to re-evaluate EVERYTHING in light of new evidence, EVERYTHING. Mr Blake maybe right...but no evidence I know of supports the idea of "cures by mental strategies/therapies", only of easing of woes (which is beneficial)
    Just as current evidence refutes the psychobabblers and very, very little evidence supports any form of the paranormal (some does though, whether Randi & Co like it or not :p)

    Some may feel talking about such esoterica weakens our standing in the eyes of the psychs etc.
    Wrong, they hold us in contempt as it is, no point trying to appease them.
    Many people live their lives in a huge lie, a massive security blanket of denial, using religion or even science, like it or not some do! to build a network of security and stability to make life tolerable for themselves. which is ok until they start bothering other folk with it.

    hell yeah! *nods vigorously in agreement*
    this is NOT "fatigue", more like the ghastliness of some severe infections or very low blood sugar. And anyone who thinks the actual 'Flu, meningitis or hypoglycemia is just like being "worn out" is clueless.

    anyway, back to your regular scheduled programming! ;)
    merylg and L'engle like this.
  20. Bob


    England (south coast)
    I see that most people have been a lot more tolerant than me, and have offered kind and thoughtful explanations to Steven.
    I think that's the right approach to someone who has offered us help, with apparent sincerity.
    It's best to patiently inform and educate.

    However, I was just struck by Steven's absolute lack of insight into medical and scientific processes.
    I would have thought that someone getting involved in medical cases, and declaring that he can help medical conditions, might have some understanding about why his anecdotal experiences do not equate to a successful treatment.
    Naivety, and medical ignorance, can be dangerous, if making medical claims.
    I have very low tolerance of such claims, because they give patients false hope, and drain patients of resources, and this is exactly how such outrages as the Lightning Process and CBT/GET get started. Reported improvements in subjective feelings of well-being are mistakenly equated to improvements in symptoms in patients with a heterogeneous syndrome, who may have been misdiagnosed anyway.

    If Steven had come here to say that he thinks hypnosis can help some patients to cope with their symptoms, and can offer a slightly better quality of life to some people, then I might have been more accommodating. But even this would be questionable to me, as the ultimate intention is still to take money from patients, with little evidence that it is going to help. It all depends on how carefully worded the claims are.

    I have enjoyed alternative therapies myself in the past, before I had ME, for general well-being, and have enjoyed them loads. I've had Reiki healing, which I enjoyed just because it was so relaxing. I've had massage. I even went on a self-hypnosis course once, and have explored it further since, and I thoroughly enjoy it. It is a method of mental relaxation and mental focus that encourages us to reach the more expansive and imaginative parts of our brain, or our deeper psyche. It's similar to how our dreams access our deeper selves. It's interesting for exploring our inner lives (i.e. exploring our motivations, our dreams, our desires, our fears etc.)

    I would never have approached such therapies in order to treat ME symptoms, though, as I understand the nature of the ME. Neither would I expect such therapies to cure HIV or Parkinson's disease. I would only use such therapies to help me cope with the negative cognitive issues that accompany acute and chronic illnesses.
    merylg, garcia, SOC and 1 other person like this.

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