Appalled by Abundant Energy Summit targeting M.E.

[Empty]

I have just listened to the Dr. Myhill talk on The Abundant Energy Summit. This is what I have to say:

Dr.Myhill begins the Abundant Energy Summit talk aptly by stating that Fatigue is a useful symptom that protects us. 'Without fatigue we would work all day, all night, all day, all night...and be dead in 11 days'. (I wouldn't I would relax and enjoy plenty of time but each to their own). This addiction people have with having to be bursting alive at the seams with joy, fun, bliss, positivity, youth etc. is simply a marketing hook because much of society is chronically tired, does 'use electricity at night to watch films' when they should be sleeping, is eating junk nutrient depleted food, is chronically dehydrated (although not mentioned) and surrounded by pollution of one sort or another. I do genuinely applaud any Doctor who will speak and address these issues for the General Public. That is in deed a good thing. This should not be viewed as Alternative, but a natural and optimal way to live.

However what stands out to me in this talk is the lack of understanding of M.E. shown. The attempts to lump Neurological M.E. into the fatigued category whilst also mixing up (Uk) CFS too which is a disease left undiagnosed due to lack of thorough physical testing does those with M.E. a grave disservice.

Whilst it is common sense to eat nutritionally well, cut out junk, sleep well, relax, enjoy life, my concern is over this definitive packaged protocol being pushed which I wholeheartedly disagree with.

I think the stoneage diet is nothing short of nonsense. Whilst it maybe a great visualisation and motivator for one to clean up ones diet and even act as a placebo, the current scientific evidence actually favours a Vegetarian or mostly Vegetarian diet. By insisting all humans should eat a paleo diet and attacking vegetarians by saying this makes them 'a major risk factor in CFS' she loses credibility. I would say the majority of vegetarians do not have CFS and also the majority of those diagnosed with CFS and M.E. have been meat eaters. It would also be interesting to study those who start the paleo diet and then fall ill with heart disease, Cancer and all the other illnesses that can be attributed to eating animals. However I am aware and pleased that there are those who benefit from a Paleo diet and I feel people should simply choose what they feel is best for them.

Taking a bunch of synthetic supplements 'because everyone is depleted' is also not something I am a fan of. Synthetic supplements can equally be a force of imbalance in the body. I disagree that they 'cause no harm' and to a lot of M.E. patients simply do not tolerate them and they have caused damage.


Of further offence is Myhill states 'People with M.E. are perfectionists who burn the candle at both ends - the personality that gets you into M.E. doesn't help you get out of it'. This old chestnut being rolled out. I thought this M.E. myth was long dead and buried.

It finishes with some more patient blaming and ways to excuse the protocol for when it does not work Such as the interviewer claiming 'Often people don't stick with the program' or 'do it in a piecemeal way for 6 months' stop doing one thing then try another etc. Again, shows a complete lack of understanding for M.E. and negates and invalidates all those with M.E. who have 100% completed the protocol with precision for a reasonable amount of time and yet have not healed or have become far worse.
Feedback falls on deaf ears?

And finally an endorsement for psychotherapy and some drugs to deal with any emotional childhood trauma which steals energy by being 'a hole in the emotional energy bucket'.

I just wish this summit had not targeted M.E. as it desperately needs a break from this kind of thinking and marketing although I was pleased to see there were no Lightning Practitioner speakers on - Always something to be grateful for. Instead focus needs to be on biomedical research and real understanding. Why could it not just target 'Fatigue'? After all Myhill claims the package will be the same no matter what illness a patient brings with them to her.

In general, I favour natural medicine because it is common sense but this makes even me sigh.

 

[JennyJenny]

In general, I favour natural medicine because it is common sense but this makes even me sigh.

My saying: Supplements always work for the healthiest people.

ME/CFS/FMS is the target of today's charlatans because too many let them. 40 years of this and I have tried everything, except the newest things over the last 10 years because that is when I woke up to the fact that this is a beast of a disease that cannot be cured and hardly treated by any natural approach. In the 60's and 70's Cancer was their target until real research began in the 80's. They also see the psychiatric hold of ME/CFS coming undone (especially in the UK) and they are ready to pounce.

Patient blaming. You didn't do the protocol right. You had a bad attitude. You only did it for 2 years.

I also think gut microbe research is the "IN" thing right now. So be it. I doubt much will come of it although there will be much hoopla over the smallest and shallowest of findings in "connection" with ME/CFS but so be it. It is sometimes worth the money to bury the idea and move on. Too many have their gut microbes out of whack for a variety of reasons for me to think there is any real connection for ME/CFS patients. (Que probiotic sales pitch for ME/CFS here. And outrage I would dare say anything bad about gut microbe research.) So far gut microbe is connected to depression and Alzheimer's (and we patients need those connections like a hole in the head).

Thanks for speaking out.

 

[Empty]

Ugly website on the whole, imo. Cheap symbols and logos. Tacky name. When you scroll down that introduction clip won't shut up - it unmutes and unpauses. Ironically, it is fundamentally disempowering people!

@JennyJenny I like your supplement saying. I wish I was more able to resist with full intention this sort of sparkly crap. It tries to leave me feeling 'what am I doing wrong?' 'What should I be improving on?' Nothing. Nothing. Nothing.

There is only about 5 more hours to listen to the Dr. Myhill talk.

Tired M.E patients microwaving their snacks for it is their only pleasure, some are constitutionally highly strung from their Mothers and grandparents....

Also mentions talks engaging another lab for the testing so that paired blood samples can be sent to acumen and another to verify results is likely in a year or two.

Testing is not necessary at all. Myhill states this.
Going on the protocol is all that is needed.
So you can get yourself Fatigue (CFS/M.E.) free, now!


The name is the game.

 

[Empty]

Lets stop labelling illness. And then it will disappear.

 

[San Diego]

@Empty I’m glad to see you put it into words. I watched Myhill and was left with a very bad feel, too. The whole thing makes me think she’s dealing with chronically fatigued people, and NOT ME/CFS patients. Heck, I bet any of us who’ve dealt with ME/CFS could “heal” the tired!

If you can clean up your diet, take a few supplements, and turn off the TV to effect a “cure”, you do not have ME. If it was that easy, we’d all be well. I find it insulting at best, abusive at worst. I expected more from her. Like you said, “blame the patient”.

 

[Cort]

I have just listened to the Dr. Myhill talk on The Abundant Energy Summit. This is what I have to say:

Dr.Myhill begins the Abundant Energy Summit talk aptly by stating that Fatigue is a useful symptom that protects us. 'Without fatigue we would work all day, all night, all day, all night...and be dead in 11 days'. (I wouldn't I would relax and enjoy plenty of time but each to their own). This addiction people have with having to be bursting alive at the seams with joy, fun, bliss, positivity, youth etc. is simply a marketing hook because much of society is chronically tired, does 'use electricity at night to watch films' when they should be sleeping, is eating junk nutrient depleted food, is chronically dehydrated (although not mentioned) and surrounded by pollution of one sort or another. I do genuinely applaud any Doctor who will speak and address these issues for the General Public. That is in deed a good thing. This should not be viewed as Alternative, but a natural and optimal way to live.

However what stands out to me in this talk is the lack of understanding of M.E. shown. The attempts to lump Neurological M.E. into the fatigued category whilst also mixing up (Uk) CFS too which is a disease left undiagnosed due to lack of thorough physical testing does those with M.E. a grave disservice.

Whilst it is common sense to eat nutritionally well, cut out junk, sleep well, relax, enjoy life, my concern is over this definitive packaged protocol being pushed which I wholeheartedly disagree with.

I think the stoneage diet is nothing short of nonsense. Whilst it maybe a great visualisation and motivator for one to clean up ones diet and even act as a placebo, the current scientific evidence actually favours a Vegetarian or mostly Vegetarian diet. By insisting all humans should eat a paleo diet and attacking vegetarians by saying this makes them 'a major risk factor in CFS' she loses credibility. I would say the majority of vegetarians do not have CFS and also the majority of those diagnosed with CFS and M.E. have been meat eaters. It would also be interesting to study those who start the paleo diet and then fall ill with heart disease, Cancer and all the other illnesses that can be attributed to eating animals. However I am aware and pleased that there are those who benefit from a Paleo diet and I feel people should simply choose what they feel is best for them.

Taking a bunch of synthetic supplements 'because everyone is depleted' is also not something I am a fan of. Synthetic supplements can equally be a force of imbalance in the body. I disagree that they 'cause no harm' and to a lot of M.E. patients simply do not tolerate them and they have caused damage.


Of further offence is Myhill states 'People with M.E. are perfectionists who burn the candle at both ends - the personality that gets you into M.E. doesn't help you get out of it'. This old chestnut being rolled out. I thought this M.E. myth was long dead and buried.

It finishes with some more patient blaming and ways to excuse the protocol for when it does not work Such as the interviewer claiming 'Often people don't stick with the program' or 'do it in a piecemeal way for 6 months' stop doing one thing then try another etc. Again, shows a complete lack of understanding for M.E. and negates and invalidates all those with M.E. who have 100% completed the protocol with precision for a reasonable amount of time and yet have not healed or have become far worse.
Feedback falls on deaf ears?

And finally an endorsement for psychotherapy and some drugs to deal with any emotional childhood trauma which steals energy by being 'a hole in the emotional energy bucket'.

I just wish this summit had not targeted M.E. as it desperately needs a break from this kind of thinking and marketing although I was pleased to see there were no Lightning Practitioner speakers on - Always something to be grateful for. Instead focus needs to be on biomedical research and real understanding. Why could it not just target 'Fatigue'? After all Myhill claims the package will be the same no matter what illness a patient brings with them to her.

In general, I favour natural medicine because it is common sense but this makes even me sigh.

Thanks for relaying your experience.

If you could do a summit on treating ME or ME/CFS what would you have in there?

 

[Cort]

My saying: Supplements always work for the healthiest people.

ME/CFS/FMS is the target of today's charlatans because too many let them. 40 years of this and I have tried everything, except the newest things over the last 10 years because that is when I woke up to the fact that this is a beast of a disease that cannot be cured and hardly treated by any natural approach. In the 60's and 70's Cancer was their target until real research began in the 80's. They also see the psychiatric hold of ME/CFS coming undone (especially in the UK) and they are ready to pounce.

Patient blaming. You didn't do the protocol right. You had a bad attitude. You only did it for 2 years.

I also think gut microbe research is the "IN" thing right now. So be it. I doubt much will come of it although there will be much hoopla over the smallest and shallowest of findings in "connection" with ME/CFS but so be it. It is sometimes worth the money to bury the idea and move on. Too many have their gut microbes out of whack for a variety of reasons for me to think there is any real connection for ME/CFS patients. (Que probiotic sales pitch for ME/CFS here. And outrage I would dare say anything bad about gut microbe research.) So far gut microbe is connected to depression and Alzheimer's (and we patients need those connections like a hole in the head).

Thanks for speaking out.

We'll see about the gut stuff. I fear you may be right - it's the latest thing - but we shall see!

 

[Empty]

B

Thanks for relaying your experience.

If you could do a summit on treating ME or ME/CFS what would you have in there?

Its interesting you should ask this, Cort. Thanks.

I am going to give this a go.

On the whole, I think Alternative Doctors/practitioners are a good thing. That is because the NHS has been so backward in common sense health advice and too busy and corrupt dishing out drugs. They have been disempowering patients and culture is changing as patients say 'enough'! Certainly the way M.E. has been handled over the years has been a scandal. More really needs to be said on that. I wonder if WDDTY will ever get around to publishing an article on the PACE trial fraud, or have I missed it? I mention WDDTY because Dr.Myhill , I believe, has recently become a panellist.

I am profoundly disappointed in most Alternative Doctors and Alternative practitioners in this field of M.E. and what is being written about it.

I can only offer uk experience and I have gleaned that other countries may have more forward thinking Alternative Doctors but maybe not as @JennyJenny has stated. Here, they are in effect behaving on parallel to the BPS model and Uk CBT/GET pushers imo. I can only hope if they understood more clearly what they were doing, they would stop. I do think mostly, it is just ignorance and carrying around with them, false beliefs, false training. If I had understood more clearly, throughout the years, I would have put a stop to it myself also, however I was desperate to get well and unfortunately more than willing to take responsibility which ironically is also something that they accuse M.E. patients of not doing - taking responsibility for their own health and well being. The buzz phrase.

I expect a lot of us are tired of them projecting these false beliefs onto us. In M.E. the medical profession said our personality has been to blame, perfectionists, highly strung, our families have been over or under protective and caused this, or we made it up, or our families are making it up, we have not liked school, we have eaten a bad diet before becoming ill, we have over worked, we are irresponsible, we have a false perception of our symptoms, we are hypervigilant, do not sleep properly, are depressed, enjoy being on benefits, need a psychiatrist, and so on.

But a different style of patient blaming also goes on here in the Alternative world where we are accused of causing or creating our illness as masters of the universe! Why have we done that? What is our illness here to teach us? What lessons do we have to learn? Why are we not willing to learn those lessons? Why are you not following the protocol properly? What else are you doing wrong? you are self blaming. You do not love yourself enough. It must be your bad karma for not responding to my excellent treatment. You must have incarnated and chosen to be ill in this lifetime to make up for in a previous lifetime when you ...(insert made up story of a previous lifetime when you did something bad which must be repaid for now).

You have had the treatment now, and you are still not better, perhaps try some CBT or psychotherapy and then come back to me. You need to relax in a massage or else it is a waste of my time. You need to stick with paying me for a few more years. You have financial stress and so that will stop you from getting better. You are an energy vampire. You are surrounded by energy vampires. You must pay for the quality of treatment or Reiki energy you receive or else it will not work to its full potential. You get what you pay for and I have given you a discount. You have negative emotions. You have to get out more. You are over doing it. You are not eating the correct diet (depending upon therapist insert paleo/stoneage/vegetarian/vegan/raw/raw vegan). You have to believe. You have not taken Jesus Christ as your only saviour into your life, if you have you have not done it properly. If you have done it properly, then he wants you to suffer. You are not believing properly. Even worse is the 'secret' voodoo they try on you without your informed consent. Lol. Will perhaps leave that for another day. (whats that? they did ask you for your informed consent but that would be your invisible higher self who said yes and not you)

There are better ones than that too. Obviously there are the occasional ones who think demon posession is the culprit and tries to 'Exercise' them lol

Alternative therapists do not seem to be very open to feedback. They certainly do not follow up. Much like Doctors. They also publish the positive results/stories and not the negative. They have personal bias and this makes me doubt because what I hear from patients isn't always what I am hearing from the therapist. Often patients are also raving about a new alternative treatment however they are clearly still sick! It clearly has not worked!
This also occurred in the uk when CBT practitioners trained patients to answer feedback questionnaires more positively so that it appeared patents had improved.

The differences between M.E. and M.E./C.F.S and how these differences affects patients and their abilities. For one thing, most places simply know nothing about neurological M.E. Practitioners think it is depression, fatigue or that you are doing it to yourself. SOund familiar?

When I asked an Alternative Practitioner for the lights to be dimmed when my eyes were extremely painful, it was deemed I was a nuisance and attention seeker. However I only asked for the lights to be dimmed because the therapist was accusing me of being stressed during the treatment when I was supposed to be relaxing. When I arrive at places often my body has overdone it and is physically stressed. I am then judged on that as if that is my normal state. Accused of being tense and yep...perpetuating the illness.

M.E. patients often can not simply swallow a bunch of supplements for a variety of reasons. How can Alternative Practitioners not understand that?
It is also nire impossible to discover the combinations and gain accurate feedback from our own bodies with ever changing variables and PEM.

The widespread misdiagnoses of patients and how this may affect Alternative Doctors treatments. As a straight forward example, a patient with a misdiagnoses of ME/CFS may go and try a regular massage. This patient actually has Cancer. A certain type of Cancer which is contra-indicated for that massage. The problem is a lack of accurate diagnoses.

Whilst the party line for Alternative practitioners is that 'we do not diagnose' (or else they get into trouble) there is a double standard here because their treatment does change when they hear you have a certain diagnoses. And I can there definitely needs to be a different protocol package for M.E. patients than those with tiredness. Many hold the same bias towards M.E. and C.F.S. that mainstream doctors have held for years. It may be better in fact not to tell the practitioner of this diagnoses much in the same way we try and hide an M.E. diagnoses in order to get some correct mainstream treatment. (Once an M.E. or C.F.S. label sits in medical notes, Doctors often refuse any testing).

Iam not sure a summit is appropriate for M.E. ? Which is why my suggestion was for it to target Fatigue and use the label Fatigue not Chronic Fatigue because people then think you are talking of CFS which is interchangeable with M.E. (and tiredness syndrome). Remember this understanding gets further diluted to the common practitioners on the street and they behave as if you just have chronic tiredness, like everyone and give bad, bad advice.

If an M.E. summit was done, it should not be plastered with fatigue/tired all the time/abundant energy catch phrases etc. and sound like a hyped up motivational talk, imo. There ought to be no: Do this, follow me you will get well or at least improve. I would prefer some honest statistics too to base my decision of a treatment plan on but I don't think that likely. I would like to see Dr.Hyde on there because I have only just learned he offers Skype appointments! Maybe a couple of good educational clips on M.E and calls for biomedical research.

Currently, practitioners actually think they are curing people with M.E. This is because the patient says they have M.E. or the practitioner thinks they have M.E. or the NHS has misdiagnosed them with M.E. but in the cases I have scrutinised I guarantee that it was not M.E.! I was shocked about this. On the other hand I have read stories that definitely sound like M.E. and they say they have fully recovered through Alternative treatment. I do think it possible although again 'recovered' has been an abused word.

There definitely should be better means tested funding for people with M.E. to trial these protocols and all Alternative Therapists should be offering a serious, healthy and generous discount to those with M.E. who are trialling the experimental treatments. They can make plenty of money from those in full time jobs.

To offer a personal example, massage in general has affected me dreadfully and caused relapses. I wish I had known this is common amongst those with M.E. (I wish the practitioners had known this too). I think lymphatic drainage from someone experienced to dealing with M.E. has been the only type of massage that I have been able to tolerate without payback. Myhill did give a plug to Perrin on this. However it is invasive and I can not even recommend this to M.E. people, at best, I would point to it.

It was a long time before I woke up to the fact that Alternative treatments were not bringing about a 'healing crises' like in healthy people and as I was being told over and over, but real damage was being done.


Fantastic.

I always say if labels don't matter, then I will exchange the pound sign to a pence sign.

 

[Empty]

The main aim of summits that look like this seems to me to be to make money from sick people. If a few people are helped, then that is great because it can be used to make more money off people.

I am not intentionally having a go at the summit per se. There are these types of things everywhere. It was simply the addition of M.E. in it that has sparked me. Marketing at people with M.E. is a tricky subject imo. I hesitate to even say this because I wonder what should be being marketed to those with M.E.
Perhaps look at the Lightening Process as an example of what definitely not to do. But having said that, it is financially successful and so it depends upon ethics and morals.

There are different disability levels, mild, moderate, severe. Patients have complained about charities who offer free information who have gone too bright in colour, font that they can not read or that hurt their eyes, information overload on the screen. Sound that can not easily be turned off. Music. The talks are on offer for 24 hours I think with a visible count down clock. I have only been able to watch two of them. I had no problem with the other one I watched. But I am not going to be recovered enough probably to take in any more for a while and so really the format is discriminating against those with M.E. who are trying to access the clips! I realise that they will be offered for a price. But really, I have seen all I needed to see. It did help having a few bullet points on the screen and no movement and not having to watch the speakers because that is too much, however equally, I do like to see the face of speakers for other reasons.

I don't like being bombarded with emails in my inbox - I haven't seen much of this yet in mine but I may have missed it and I haven't looked in spam. But personally, I do not think this would be appropriate to send to someone with M.E. and is what I received today on Day 6:

"I hope you’re initiating (and experiencing) healthy improvements in your life--the trickle effect of your stories along with tens of thousands of others will help the world improve its health!
Today, our speakers look at brain function and limbic kindling, neuroplasticity and how psychological techniques, including intention and neuro-linguistic programming, can retrain the brain to repair limbic disorder and the unconscious chronic stress response. Plus, Ken Wilber introduces Part 2 of integral theory and psychology".


Also I was unable to participate in the raffles to win free stuff because it all was too much information on the page. Perhaps because I was already information overloaded. It may have been really simple and easy but I could not do it. (That would be my bad karma). lol.

 

[Empty]

"How busy is your weekend?
Please remember that you can purchase the downloads of the entire event to ensure you won't miss the one thing that could help you rediscover your energy!

At USD $47 for online access, it's only $1.57 to own each presentation--it would cost thousands to get this important health information in person!

At USD $97 for the online access + flash drive packages, you avoid having to download each talk’s audio, video and transcripts individually--just plug in the flash drive and get instant access to everything!"


This is the rest of the day 6 email. Lets see, how busy is my weekend?

Would not want to miss that one thing that would help me rediscover my energy.


It is handy actually having video and transcripts on that $97 offer.
Edited to add - I think I have misunderstood that offer - I don't know what a flash drive etc is..
and am flagging from yesterday. Point is, a transcript would be handy.

But I disagree that it would cost thousands to get this important health information in person. Depends on the person and also most of it is available free on line or on forums.

 

[Empty]

The Evolutionary correct diet is to look back past 10,000 years ago and more and follow that?
Evolution going backwards?
What a story.

 

[Empty]

If those with M.E. were perfectionists (which they are not, some might likely be).
But for peace, lets say most people with M.E. are perfectionists.
This would place them in the ideal position of getting well, if getting well did have anything to do with following the Myhill protocol.
Why? Because they would follow the protocol with their perfectionist traits, with utmost diligence and precision.

 

[Empty]

"You've made it to Day 7--that's nearly 30 hours of time spent

learning about your health--I’m so proud of you!​

Tomorrow is Encore Day, during which I’ll replay the most popular presentations from the summit.

But first, today our speakers focus on personal psychology, culture and interpersonal relationships that directly affect our health and energy levels through behavior and psychoneuroimmunology".

This is part of the sales email from the summit sent to my inbox, today. Just for those who were wise enough not to subscribe in the first place!

 

[Empty]

There are half a billion Vegetarians in India, out of 1.2 billion population.

http://www.vegetarians.co.nz/articles/500-million-vegetarians-in-india/

". Vegetarianism is very much a mainstream way of life with 42 percent of Indian households eschewing meat, fish and eggs "

Does anyone, by any chance, have the stats on how many of them have CFS?

Does anyone have any articles on Eastern thoughts re: stoneage diet?

Thanks!

 

[Seeksassy]

My saying: Supplements always work for the healthiest people.

ME/CFS/FMS is the target of today's charlatans because too many let them. 40 years of this and I have tried everything, except the newest things over the last 10 years because that is when I woke up to the fact that this is a beast of a disease that cannot be cured and hardly treated by any natural approach. In the 60's and 70's Cancer was their target until real research began in the 80's. They also see the psychiatric hold of ME/CFS coming undone (especially in the UK) and they are ready to pounce.

Patient blaming. You didn't do the protocol right. You had a bad attitude. You only did it for 2 years.

I also think gut microbe research is the "IN" thing right now. So be it. I doubt much will come of it although there will be much hoopla over the smallest and shallowest of findings in "connection" with ME/CFS but so be it. It is sometimes worth the money to bury the idea and move on. Too many have their gut microbes out of whack for a variety of reasons for me to think there is any real connection for ME/CFS patients. (Que probiotic sales pitch for ME/CFS here. And outrage I would dare say anything bad about gut microbe research.) So far gut microbe is connected to depression and Alzheimer's (and we patients need those connections like a hole in the head).

Thanks for speaking out.

I clicked on "Register" before I scanned the content. Once I had scanned it I thought it sounded gimmicky, so when my confirmation email came for the registration I didn't follow through. Then the emails followed trying to sell me stuff. This just confirms my initial impression. I hope the emails will stop...

 

[Seeksassy]

I clicked on "Register" before I scanned the content. Once I had scanned it I thought it sounded gimmicky, so when my confirmation email came for the registration I didn't follow through. Then the emails followed trying to sell me stuff. This just confirms my initial impression. I hope the emails will stop...

Forgot to mention that I have unsubscribed from these emails several times.

 

[Hari]

If you could do a summit on treating ME or ME/CFS what would you have in there?

The following:

The context should be: Identify what gave results to few, Identify what did not give results to few. And see how should we forward by examining who obtained the results.

1. List out and discuss all the identified (or assumed) causes
Find from every participant or through survey what many think causes ME/CFS (SEID)

2. Have few individuals who restored their health from SEID discuss what helped them to restore
3. Have few individuals who COULD NOT restore their health from SEID despite their efforts for more than 5 years

4. If few restored their health by following particular methods, then do we have a solution for SEID? Can the entire community do further study and explore the possibility to recommend the same to everyone.
5. In what direction the scientists and doctors are moving to find a solution to restore health from SEID?
Our scientists and doctors have done enough work identifying root cause for many disorders, but did not do enough to treat or cure the root cause, but became excellent at managing the disorders. To treat SEID are they moving towards disease management or complete cure? If they are moving towards management, then history repeats just like cancer.

6. At large in our current society are we having a life style that is helping each and everyone to live a healthy life or is it a struggle to live a healthy life or easy to have bad disorders?
What are the influencing factors either way?
7. What kind of role the environmental factors like - pollution, radiation from various sources are contributing to SEID - either to become sick or to restore health?

SEID Individuals role in curing / restoring health:
1. What are the behaviors and life style must be adapted?
Like wise family and Friends role.
Self help and counselling organizations role
2. Why they are not able to adapt a life that helps to restore health. if we are sure of the end result?
3. How lifestyle and behavior may influence the change in the DNA so that the individual becomes healthy or even sick?
How long it take for the DNA to be effected either way?

Employers role: What employers should do to support those who are suffering from SEID and willing to work and can work? What kind of awareness co-workers need to have for the same?

Governments Role: What should govt. across the globe do to create awareness and help everyone who need?

Healthcare providers and payers role: What they should consider to support the SEID community to live a balanced and healthy life, reduce healthcare costs and improve productivity at work?

I see if the entire echo-system for SEID is built then the following outcomes are evident:
1. Reduce the impact and severity of SEID at individual level and at community level
2. Help many to live healthy and even avoid SEID all together (for those who are prone to SEID)
3. Help many to restore health from SEID

Any event on ME/CFS should address the above and take home a clearly defined action plans to progress further.

Have fun,

Hari

PS: I prefer to call SEID individual. I prefer not to use to word patient for any one. Some times I may use patient for ease of communication.

Please see my post to understand how cancer is being treated and the sad out come. The estimated survival rate remains the same even by 2022, that is 2% for some cancer types. http://www.cortjohnson.org/forums/posts/7707/

 

[Empty]

http://www.hfme.org/

Have you come across Dr.Hyde and The Hummingbird Foundation @Hari? I think you will find it fascinating. It states what M.E. is and what it is not and how to diagnose it.

Personally, I find that its the failure to diagnose is the problem. If the ailment was diagnosed correctly, then alternative or allopathic or both protocols could be put into place.

Empty

 

[Empty]

Forgot to mention that I have unsubscribed from these emails several times.

I unsubscribed and fortunately, the emails have stopped! I was waiting for a while to make certain before I posted.

 

[Hari]

Thanks @Empty for your link. As you said the information is fascinating.

I agree with you on correct diagnosis. Since we do not have a proper diagnosis, but I believed that we have a solution, I developed a technique to follow based on my experience and understanding.

I call it a layered solution. Layer one gives all the individuals the base required nutrition. In Layer two each individual will receive additional treatment based on symptom severity. This approach gave me good result.

My understanding complies with the writing from the page: http://www.hfme.org/restingtips.htm.

I gave the same page to few more who might find some useful information.

I believe in this forum we should ask all the participants what do they think is the best approach to become healthy for ME/CFS individuals. What do you say?

Have fun,

Hari