The Hummingbirds' Foundation for M.E.

The Hummingbirds' Foundation for M.E. (HFME) is fighting for the recognition of M.E.,
and for patients to be accorded the same basic human rights as those with similar
disabling and potentially fatal neurological diseases such as M.S.

Comments on the 'Lightning Process' scam and other related scams aimed at M.E. patients

This page features comments about scams such as the Lightning process, Reverse therapy, Mickel therapy, Gupta retraining, EFT and so on.

Psychologically based ‘treatments’ touted by some groups as being very beneficial or even curative for ‘chronic fatigue’ (a term used interchangeably with CFS and M.E. by these groups) such as ‘Reverse Therapy,’ ‘Mickel Therapy,’ ‘Emotional Freedom Techniques’ (EFT) and the ‘Lightning Process,' may or may not be useful for those with fatigue caused by various emotional or behavioural problems, but they simply cannot improve authentic M.E.

As with similar therapies such as CBT however, the severely affected in particular (but also those with moderate M.E.) may also be made considerably more ill short- or long-term by these inappropriate and (physically and mentally) cruel interventions. They can often cause very severe relapse. If these treatments don’t work, the victim is blamed for ‘not trying hard enough.’ So there can also be a huge emotional cost from being subjected to what amounts to serious emotional abuse.

These money-making scams are dangerous, and will never help genuine M.E. patients. Media reports of recovery of some individuals with this 'treatment' is dubious at best, but even where claims are genuine, these are NOT in any way M.E. patients. It is cruel and unhelpful to recommend or badger M.E. patients about trying such pseudo-treatments; please don't do it!

Segments on this page so far include:

  • Group comments on the 'Lightning Process' scam and other related scams aimed at M.E. patients
  • The Lightning Process by Lesley Ben
  • The petition to try to stop Esther Rantzen commenting publicly on M.E. or 'CFS'
  • Lightning 'therapy' letters by Dr John Greensmith
  • Comments on Lightning by John Sayer (and a call for you to send in your own 'Lightning Process' story)
  • Other comments on Lightning 'therapy' etc.

 

On the 'Lightning Process' scam and other related scams aimed at M.E. patients

Some comments and discussions in the AHGs Yahoo groups have been so wonderful and useful, that I feel like they would be enjoyed by other members of the M.E.community, so I have re-posted some of them here (with permission).
 
 
Has anyone heard of this Lightening Process that promises to CURE ME within three days?
 
I looked at the site and just reading about the daily planned routines wears me down.I was suppose to have a mammo in two hours but I can't go. I am overwhelmed or something after having read about "how it is done". 

If something will cure me, PLEASE DO IT! I don't care how but just DO IT.  And of course, although I have not gone into it deep enough, I am sure this will cost a great deal of money. - don't all cures?
 
p.s. Am willing to forward the link to anyone or to the  site in general if permitted to do so.
 
Rosemary
 
 
Hi Roseanne,
 
This is a cure maybe, for a small group of those with certain types of fatigue. But it has nothing to do with M.E. and they can no more cure M.E.with this tripe than they could cure MS or Parkinson's or any of the other diseases similar to M.E.
 
They are talking about 'CFS' not about M.E.
 
And it wouldn't even work for most of those with 'CFS'! It is just a money making scam based on ridiculous psychobabble. They make lots of money off very desperate people. They also blame those who don't get well for this lack of improvement. Very, very nasty.
 
Don't touch this group with a bargepole! They could cause you severe harm, both physical and emotional.
 
'Talking' can't cure you of serious cardiac insufficiency or measurable testable brain damage etc. Being brainwashed CAN convince you to push yourself too hard though, and end up paying for years or forever for being a bit more able for a short time. It is the worst sort of abuse and M.E. patients could easily end up paying for this terrible advice for many many years, or longer.
 
Jodi
 
 
 
Hi Roseanne,
 
I'm sorry you're so weak and low.  The Lightning Process isn't the answer, though.  As you know, it's one of many approaches that claims to use the 'power of thought' to heal us.  It claims that if we adjust our mental attitude, we will find that our illness falls away.
 
This is wrong, harmful and insulting.
 
There is a little bit of science mixed in - they claim that negative thoughts, fear etc cause adrenaline, and that has an effect on the body generally (something like that - I can't quite remember the details).  That's the grain of truth that is supposed to give it scientific legitimacy - but of course there's so much more to ME than just adrenal dysregulation.
 
The Lightning Process is very expensive.  You are required to say you believe in it before you start.
 
I find it ironic that the Lighting Process uses a lot of the same concepts as Wesselyite CBT, such as the notion that our illness is merely 'mistaken illness belief' and that it can be cured by adjusting these beliefs.
 
I also feel it's cruel the way the LP plays on the vulnerability and desperation of ill people.  Of course we want a cure so badly!  So many of us have felt like you:  'I am overwhelmed... If something will cure me, PLEASE DO IT!  I don't care how... but just do it.' 
 
Sadly, though, there is no such cure at the moment. We should resist the cynical or gullible offers of a cure (like LP),while continuing the slow and difficult business of doing all we can to support our health, addressing particular problems, and trying to remain hopeful in a world with no magic cures.
 
Best wishes,
 
Lesley
 
 
Roseanne,
 
I'm sure you know that nothing is going to cure a chronic, debilitating, neurological disease like M.E. in three days.
 
The lightening process does cost alot of money, is VERY sketchy on handing out real details of what it is they actually do. They seem to take a more psychological approach, and I believe there is some babble about controling adrenaline (by controling your psyche).
 
They have not been subjected to any unbiased and objective studies.
 
They ARE good at PR though. They get pseudo celebrities to tout their garbage, and often have stories about people the have supposedly 'cured' in the papers (usually people who never actually had real M.E. in the first place, and often go on to become practitioners themselves).
 
Frankly I am sick of hearing about it (this is in no way a go at you Roseanne, like I said, they are really good at self-promotion). Just yesterday my cousin emailed me a message about it. ARGH!
 
The worst thing about it is that it is trivializing M.E.. If people start believing that it can be cured it three days they are all going to think 'Well it can't be that bad then can it'. In addition, it is giving all the wrong information about M.E., I'm sorry, but adrenaline really isn't one of my problems!
 
This rant is definitely not directed at you Roseanne, but at the practitioners of the lightening process, who will tell those people that it does not work for (quite a few by my guess), that they were not receptive enough for their treatment (blame the patient again). They still take their money though.
 
Please don't buy into their rubbish Roseanne. We are all desperate for a cure, but the truth is that it is not going to be that easy. Please rest, it will do you a lot more good.
 
take care, N
 
 
The Lightning Process (or LightEning Process as it is often called, because it lightens your wallet) is a money making scam that preys on desperate people.
 
"Therapists" are former course followers who are "cured" (much like it goes with Scientology foe example), and participants are told they are "doing" M.E.
 
They have a very agressive PR regime, and I suspect it's a select group of people who poses as patients and bombard the media with letters on how well it worked. The story is always the same: they were sceptic of course, they heard it from a "friend", and to their amazement it worked so well that they went from years of being bedridden to an insanely active lifestyle.Of course they never mention that they are actually at the core of the LP business.
 
Roseanne, you should stay away from this junk as far as possible ((((hugs))))
 
take care,
LM
 
 
Hi All,
 
I feel like I know you all so well as I read all the messages (as much as possible) but am usually not up to writing much, however, at the mention of the dreaded Lightning Process, I had to say something. 
 
I looked into this a few years ago when a friend was considering it.  Firstly, they (the LP-lot) only accept you after you have filled in a questionnaire.  But even before that, they attempt to determine how willing you are to accept the Lightning Process as a therapy and that any failure is your own fault.
 
Although it is against the LP rules, a friend who under-went the process sent me her notes on the course and it teaches you basically to avoid thinking like you are ill.  I believe one example they actually give is of a woman that is trying to have a baby.  They say that because this woman is suddenly thinking of babies all the time all she will see is babies, and prams and other baby-related things reminding her of her fears of conceiving and thus stressing her out, and possibly even stop her from conceiving.  This, the process claims, is what us ME-ites are doing - because of our 'ill thinking' we see people running, working etc etc and this is confirming our ill thinking, causing the adrenal glands to go and so we stay ill.  The
Lightning Process apparently is a therapy to stop this type of thinking.
 
This is a very rough attempt at explaining one aspect of what they do, so I hope you will forgive me, but what I will say is it is rubbish.  This friend of mine believed she was better after the Lightning Process, and she is back at work, but everytime I speak to her she seems to be struggling and taking on too much because another factor of this process is IF IT DOES NOT WORK they blame the person with ME for either not wanting to get better, or not 'doing' the process.
 
There are many horror stories of people with ME actually being bullied into attempting to do more than they are ready for by Lightning Process practitioners and some people have actually gotten worse (remarkably even Action for ME did an article on this).  If they say they can't, they are told they don't want to get better and are clinging to ill-thinking.  The reason there are not more horror stories is because they carefully vet people before they will be allowed to take part, thus ensuring the results they want and, in my eyes, proving that this cannot be a cure for ME for the very reason that it should be able to work on any ME sufferer if it truly is a cure [and not juust various types of tired people who have bene told they have 'CFS'.
 
For all that, it is crazily expensive, my friend who did it a few years ago paid around £560 from what I remember.
 
Roseanne and anyone else considering this, I would stay well away.  I researched it extensively back then as I was also desperate for a cure. 
 
Sorry I went on for so long, but people like Phil Parker make me even sicker than I already am!  Hope something I said helped.
 
Healing Hugs
J
 
 
YOU KNOW, that is exactly what I thought and I am among those who suffer from ME...I thought - if people can be so easily "cured' and if the testomonies are true...then I can't be that bad...I don't doubt ME being bad ...I tend to think I exaggerate myself.  I tend to think perhaps I am making something BIG out of something that is not that bad.
 
I tend to doubt myself a lot. I mean it...my memory being bad, if someone tells me I did something, I have to think I must have done it....even WORSE, I have, in the recent past, KNEW IN MY HEART that I had not done something, yet because one person had convinced someone else I care about that it DID happen, I began to DOUBT myself and wonder if I DID do it.... I can see how cops talk people into confessing.  I KNOW myself..yet I can be made to DOUBT myself.
 
I promise...no more rubbish.....I just could not believe what was being advertised, yet there was so much 'truth' in what the patients were saying and you are right...they don't tell much about how they 'cure' people [or say what disease they really have/had.].... Again - I doubt myself when I hear things like this... It was sent to me through email....otherwise I would never have even heard of it
 
Roseanne
 
 
I must tell my nieghbour about the Lightening Process. She has a broken ankle, but maybe through the process she could come to believe that she hasn't.
 
Kit
 
 
 
Well said, J!
 
A cruel aspect of LP is the way they blame the victim when it doesn't work - the poor sufferer is accused of not wanting to get well and of being unwilling to let go of illness beliefs.  So cruel - the sufferer has wasted their money and their hope, and is now told that the illness is all their fault.
 
Awful as that is, maybe it's better than the scenario where the ME sufferer gamely goes along with the LP story, and tries to think themselves well, and behaves as though they are well - and damages their health irreparably.  J, I'm sorry your friend went through this - but thank goodness you didn't!!!
 
Best wishes,
 
Lesley
 
 
Yes, AS, I agree - Reverse Therapy & Mickel Therapy are dangerous just like the Lightning Process.  They use the same mind-over-matter trick, blame the victim for the illness, etc etc.
 
The LP uses the fig-leaf of talk about negative thoughts affecting the adrenals to give a scientific-sounding justification, when in reality ME is so much more than just adrenal dysfunction.  Similarly, it's easy to claim that the hypothalamus is somehow involved - yes, hypothalamic dysfunction is involved in ME, but again, it's so much more than that.
 
It's a low trick, to pretend that they acknowledge that the condition is physiological and not psychological, and then to offer psychological treatment.  It's unscientific double-think. 
 
If we could 'think our selves better' we would all be out dancing and making merry - we want it so much.
 
Best wishes,
 
Lesley
 
 
We already know the Lightning Process is rubbish, but just in case we need some 'authority' on this, Neil Abbott of MERUK said that there is no evidence that it helps ME patients.
 
'Dr Neil Abbot, director of operations at ME Research UK, is sceptical about adrenaline playing a role in the condition. 'We should like to see some evidence that there is an adrenaline rise in ME sufferers, and if there is, whether lowering adrenaline induces a "lightning"cure,' he says.'
 
(In other words, he's saying there's no evidence for the scientific claims of LP.)
 
This quote by Abbot has been given in many  places, eg
http://www.meassociation.org.uk/content/view/196/70/
 
Lesley
 
 
I would also like to point out that while high adrenaline levels are commonly seen in depression and other illnesses, M.E. is actually linked with LOW cortisol levels. In fact, many of us are taking cortisone tablets daily because our cortisol levels are so dangerously low.
 
Again, they are talking about various types of fatigue or 'CFS' not M.E., no matter how many times they wrongly use the term M.E. to refer to these tired people!
 
Jodi
 
 
Thanks J for a fairly direct LP story. And thanks to all other contributions, as it is a little more support for my own position on it.
 
My mother first mentioned it to me a couple of years ago afyer some family friends in the UK said it had cured their daughter. I looked into it a bit then initially interested, but was very suspicious that i could find hardly any info on it, that it was a TM business, and the secrecy around what it involved. I had no interest in pursueing it.
 
My mother has brought it up a few times since, and I have since found out more about it and managed to come accross some more balanced articles than just the LP spin. It confirmed for me that I thought it was total BS and that I wouldn't do it.
 
Recently my mother heard from another good friend about another LP success story. Even after I went through all my arguements for why I was suspiscious of it and why I didn't want to do it, she said it was hard for her to be constsnly hearing these success stories and not want to look into it further. I ended up in tears - frustrated, but also coz of raw nerves being touched (in the past before I knew what was wrong with me, I went trough a phase of `positive thinking and Affirmations - I know what a mind-$%#& it is to be around peple who suggest the circumstances and even every little syptom is an inticator of some flaw in your thinking, or part of some convoluted bigger picture of your psyche and relationship with the universe, and that all your `failure' to improve your situation is clearly your own fault, and that you should be trying harder.... no matter that you've been trying more than hard, very earnestly, for as long as you remember.)
 
I felt a bit on the spot and was thinking that it would be unreasonable for me to tell her not to follow it up if she felt she needed to do that..... but then what?
 
Even with this recent unfortunate death story, she saw one where LP cured a young woman, and that's the story she singled out to pass on to me.
 
I'm thinking I am going to have to be much more firm about the fact that I don't want to know anything more about it, and if she does find out more, fine, but to never discuss any of it with me. It just upsetting me and making me angry - she knows what I think and how I feel and I have passed on things to her that support the validity of my position.
 
Now - my mother is actually pretty great, and supporting me so well in so many ways, but this LP issue is starting to take on a bit of a life of it's own in our house-hold lately, and I really, really don't like it  :< :< :<
 
For me the idea of `illness thinking' holding me back just does not make sense. I've been over-ridng symptoms forever - admittedly very stop and start due to resulting symptoms flares that were not recognised as that but as yet another of my growing collection of `failures'.... but I KEPT ON TRYING AND DID NOT KNOW I WAS SICK. ... And I finally found ways of managing it all a bit better, working part-time and doing more meditation and related study, which seemed to help me be a bit more functional..... but NOT KNOWING I WAS PHYICALLY ILL led me to continue dojng things despite the symptoms. For a while there I figured that I may always be uncomfortable and more stressed than most people seemded to be ( I had been in pain so long it was normalised and I just would have times where the `discomfort' (though didn't really even call it that)  would be moreoverwhelming than at other times when I could just carry it around with me.... I alwys felt so awful in my skin since age 8 that I barely know what feeling normal is like), but at least I had learnt to not indulge my `neurosis' (overwhelm) and `resistance' (pain, exhaustion, and instinctive need to stop) so much, but had found ways to keep going and accomplishing more than I ever had before...
 
.... and guess what? - I ended up getting very sick and can now do much, much less than I was ever able to. Sur-bloody-prise.
 
If I had known I was physically unwell and knew to respect my limits, I probably would be in a much better position now rather than much worse. (btw- still I am not in as bad a way as some people here, I know). So the suggestion that now I might recover if only I dodn't gett stressed about the possibility of getting ill just DOES NOT WASH ... in fact I think it's about the only thing that has saved me from getting sicker. I think it is now a healthy, respectful fear, and I only wish I had developed it earlier. There's NO WAY I am going to pay someone lots of $$ to try and convice me to reverse my too-hard won healthy instincts.
 
Anyway - I know I'm not saying anything new or ground-breakning, but this LP garbage has been a bit of a personal hot-button feature of my life lately and I guess I'm just venting to a sympathetic audience :/
 
TYK
 
 
O, I sooo sympathise with you, and this is indeed very frustrating  and upsetting. ((hug))

I do sympathise with having a mother that instead of listening to what you tell her, goes her own way and goes along with all that junk that is out there. I am just so lucky my mum hasn't heard of LP yet, she is now in a phase where she wants me to go see Dutch ME/CFS/CF doctors.
 
Recently you have told us about Kali, and how the maternal instinct can me a bulldozing force of nature. I think I see an echo of that here too. It's frustrating, and painful, but your mum wants you to be well so badly that she wants you to try ANYTHING.
 
Maybe you should tell your mum what you told us: that you don't want to get in the way of your mums own "journey" regarding this topic, but that on the other hand you know it's such utter useless and harmful crap, and you don't want your mum to fall for the sales pitch, and that it would be very sad and painful for you if she did.
 
And that the positive stories are nothing but a pr stunt that earn the people propagating it a lot of money, like tv commercials (where you get pearly bright white teeth from toothpaste for example), so she should stay critical to what she hears.
 
Thanks for sharing, it helped me to vent a bit too, lol! Good luck with this.
 
take care,
LM

 

 

 
>
> I absolutely agree with what you said about how it can't just
> be 'illness thinking'. I too kept going and ignoring my symptoms.
> Infact I remember actually verbalising it. I said "I'm fed up with
> being sick, so I'm just going to ignore it, and it will eventually go
> away" (*cringe*).
> I took denial to a whole new level!
 
I had to look up "cringe", does it mean being embarrassed?
 
I completely relate to this quote. And N, I think I have used those exact same words several times. (Really!!!) Even though you are very ill and very scary things are happening, there are factors that will make you say and act like this:
 
1 Everyone else acts like it's no big deal, so why would you think otherwise?
2 You're young and can't imagine that you will get something scary and life-threatening (Combination of NIMBY and youthful hybris that makes sixteen-year-olds do death-defying stunts on their scooters)
3 You don't want it. (This gives more weight to points one and two.)
4 You DON'T WANT IT.
 
I find it a very logical reaction to this situation. Although I am not embarrased about it myself, I am very happy to be reading your experience with this. I'm still a bit gobsmacked at the parralels my experiences have with all the people on here. (It gives a strange sort of comfort too.)
 
I think a lot of us have done this at some point or another (and I must confess, after a LONG space of years, I have done it two weeks ago because I was so in distress that your mind makes this the "easy way out"). I also bet that a lot (if not all) of you have tried graded exercise, either by yourself or with assistance of someone (a physical therapist for example).
 
So we know from experience that just not "doing" M.E. will not work (it just bites you back in the bum with extra force). That's why these bogus "therapies" make me extra angry: they wave a piece of cotton at a starving dog, pretending it is a steak. The dog has tried eating the cotton rags in his pen, and knows that they will make him feel even more awful. But because he is just so hungry, and the person waving the "steak" makes it sound so juicy and nice, he might be tempted to try it anyway.
 
Just some musings....
 
take care,
LM
 
 
Hi LM,
 
Yes when I wrote cringe I did mean that I was embarrassed. Mostly by how stupid I feel, looking back. Knowing what I know now, my actions
seemed so blatantly stupid!
 
I think there is also a point 5, well for me there was:
 
5 Your body has always fixed itself before, so why wouldn't it this time?
 
It really is amazing how much our stories are all the same, it's almost spooky. I think that is why we are all so adamant to fix the way ME is diagnosed and treated. We all KNOW what will happen if it is done the wrong way. So tragic for more people to end up in the ME trash pile, when the knowledged to stop it is there.
 
How many of us would actually be able to earn some money now, if we had rested properly at the start?
 
take care, N
 
 
> Yes when I wrote cringe I did mean that I was embarrassed. Mostly
by
> how stupid I feel, looking back. Knowing what I know now, my
actions
> seemed so blatantly stupid!
> 

 Do you really feel so embarrased about it? I think I have recently told here how I for example vaccumed myself once to a complete paralysation attack because I was just so pissed off about it that I decided to hoover the house. And then the "milder" version of just going on, doing things you either want to do or are expected to do by others.
 
I would feel embarrassed about it if everyone had warned me about it, but now I find it all a very logical reaction to the whole situation.
 
> I think there is also a point 5, well for me there was:
>
> 5 Your body has always fixed itself before, so why wouldn't it this
> time?
>
 
Yes, so true!!!
 
LM

The Lightning Process by Lesley Ben

Background: the Support Group recently had a talk about the Lighting Process (LP).  The account of the talk in the following newsletter appeared to endorse LP as a treatment for ME.  I am very concerned by this.    Endorsement of LP damages the interests of ME patients.

The biomedical reality of ME is under ruthless attack.  A campaign has been fought for many years to rename ME as ‘CFS’ and to define ‘CFS’ as a psychosocial illness.  This campaign has been fought by insurance companies and government in the US, the UK and other countries, seeking to deny the illness and discredit the insurance and welfare claims of the legitimately ill. This campaign is financially motivated: many insurers exclude or limit liability for psychiatric illnesses, and the DWP pays benefits for psychiatric illnesses at a lower rate. 

Whether people with ME are aware of this history or not, they are adversely affected by it.  The NHS has been influenced to the extent that, advised by an officer of a large insurance company, government guidelines describe ‘CFS’ or ‘ME/CFS’ as a psychiatric illness involving ‘erroneous illness beliefs’  and recommend psychological treatment such as CBT.  Also advised by an insurance company officer, the DWP’s ‘Welfare Reform’ has adopted the practices of the insurance industry and slashed the welfare budget by discrediting legitimate claims.  Caught between the pincers of the NHS and the DWP, life has become very much harder for people with ME.

The campaign to discredit ME and characterise it (usually under the misnomer ‘CFS’) as a psychiatric illness, depends on denying the following facts:

-       ME is a neurological illness, recognised by the World Health Organisation (classification ICD-10 G.93.3)

-       ME is not a psychiatric or psychosocial illness, and it does not involven ‘erroneous illness beliefs’

-       Psychiatric intervention cannot cure ME.

Given this context, I feel we must be very careful in considering the effects of a ‘talking cure’ on ME. 

Positive thinking, empowerment, the creation of helpful new neuronal pathways and so on may be helpful to all people who are seriously ill.  There is certainly a feedback mechanism between the mind and body.

However, if recovery can be achieved by changing the ill person’s beliefs and curing the body via the mind-body link, then the illness was not ME.  In such a case the illness was psychosomatic and involved those ‘erroneous illness beliefs’ beloved of the psychiatric lobby. 

(Similarly, if regulating adrenaline via the mind-body link effects a cure, then the illness was not ME but adrenal dysfunction.  It should not need saying that ME involves dysfunction of many systems besides adrenal regulation)

To claim that LP can cure ME is offensive.  It implies that the illness is psychiatric, either in its origin or in its perpetuation mechanism.  (Strangely, LP practitioners deny this; using doublethink and doublespeak that Orwell would have marvelled at, they state that the illness is physical while claiming that it can be cured by psychological methods.)

To claim that LP can cure ME is politically harmful.  As above, LP practitioners appease patients by stating that the illness is physical, while playing into the hands of the psychiatric lobby by seeking to demonstrate that it is in fact psychological in that it can be cured by a ‘talking therapy.’

To claim that LP can cure ME is dangerous.  It is crucial that people with ME do not push themselves beyond their physical limits.  Study after study has proved that Graded Exercise Therapy (GET) has been proven to be damaging for this reason.  LP suggests that people with ME are ‘stuck’ and do not challenge themselves, possibly due to fear of the consequences of exertion.  The opposite is true: most people with ME tend to overdo it, and only by bitter experience learn the terrible consequences of doing so.   While there is no cure yet for ME, the most important thing sufferers can do to help themselves is not to go beyond their limits.  If encouraged to disregard their limits by LP, ME sufferers may do themselves irreparable harm.

 

Follow-up on the Lightning Process and Emotional Freedom Technique

Background: I recently wrote to the committee outlining my concerns about the seeming endorsement of the Lightning Process.   I am writing again because I remain worried about an apparent bias in favour of psychological or emotional ‘treatments’ for ME.   I am concerned about the forthcoming talk on the Emotional Freedom Technique.

The Support Group may have influence on members who are desperate and vulnerable.  When a treatment is controversial and, according to studies, potentially harmful, group members should be made aware of the issues.

The Lighting Process (LP) treats ME as an illness with a psychological cause and physical manifestations.

People with ME should be warned that while LP involves changing patients’ beliefs about how much they can do, the scientific view supported by numerous studies is that overexertion can be very damaging for ME patients.

The issues are similar with the Emotional Freedom Technique (EFT).  I’m sure that all people, ill or well, can benefit from relief from emotional blockages.  However, EFT should not be presented as a cure or treatment for ME.   An EFT practitioner is quoted as saying ‘EFT offers relief from… major, life affecting conditions.’  Is the claim that ME is such a condition?  This is the implication.  Of course, the EFT practitioner is free to hold whatever personal views he pleases.  However, Support Group should not seem to make the same claim by stating ‘Once learned you have the tools to clear any emotional blockage which in turn triggers the symptoms causing so much distress.’  Does this refer to ME?  Again, that is the implication.

The reason why it is important to be clear on this issue is the fact that there is a campaign to denigrate ME as a psychosomatic illness.  This harms the interests of sufferers in many ways.  It affects their medical treatment and eligibility for benefits.  It affects the perception of ME by Government, the medical profession and the general public.  It obscures research into the illness and blocks research funding.

It is in the financial interests of governments, pharmaceutical companies and insurance companies to discredit the biomedical reality of ME and to push the view that it is a psychosocial illness.  ME sufferers and their friends must resist this as strenuously as possible.

Unfortunately, the charities which should be representing ME sufferers have betrayed them on issue.  Both the ME Association and Action for ME collaborate with the psychological lobby.  There has been debate over controversial actions by these charities such as:

-       endorsing CBT as a treatment for ME

-       collaborating in government trials and research aimed at substantiating the psychological approach

-       referring to the illness ‘ME/CFS’ or ‘CFS/ME’ rather than ME

Because of this context, support groups which represent the interests of people with ME should be aware of possible ‘slippage’ in the message given when discussing emotional therapies.  Support groups should be very careful not to give the appearance of endorsing the psychological view of ME, or of being unclear on the issue. 

ME is a biomedical illness, as classified by the World Health Organisation (ICD-10 G93.3).  It is a neurological illness which involves dysregulation to many of the body’s systems.  It is not a psychosomatic illness.

We are all emotional beings with a psychological dimension.  We may or may not have psychological issues which trouble us or affect our lives.  This is as true of people with ME as it is of people without ME.  People with ME have the same range of mental health, from fine to not-so-fine, as the rest of the population.  There is no correlation between ME and mental health as far as aetiology goes.  The patient’s mental state neither causes nor perpetuates ME.  (The experience of appalling abuse and the harrowing hardships of life with ME may well affect a sufferer’s mental well-being.  However, many ME patient cope remarkably well with the challenges they face.  In any case, this is not the psychological reality with which LP and EFT are concerned.)

I am not against emotional techniques; I believe they might well be helpful.  What I am against is the claim that they are a cure or treatment for ME.  This claim is insulting, politically damaging and medically dangerous. 

The petition to stop Esther Rantzen commenting publicly on M.E. or 'CFS'

If you are not aware of what harm Esther has been causing those with M.E. (and misdiagnosed as 'CFS) you may wish to read some of the comments on the petition, or this page.
 
In short, Esther's daughter recovered from fatigue or chronic fatigue through psychological therapies, and because of this, Esther is now telling anyone who will listen that M.E.can be cured through talking therapy. Esther seems unwilling to do even the most basic research which would make it clear to her that chronic fatigue is NOT at all the same thing as M.E. and that in fact the two could not be more different.
 
It should also be noted that most (non-M.E.) patients misdiagnosed with 'CFS' are also not mentally ill, and need proper treatment for the diseases they have, not psychological mumbo jumbo or other pseudo-treatments.
 
This petition is unlikely to stop this ignorant publicity-at-any-cost woman, but signing it does only take a few seconds, so it can't hurt either. Please sign if you can, whether you are in the UK or not. Leaving a comment is optional.
http://www.ipetitions.com/petition/esther/signatures
 
 
Thanks Jodi, I've signed it. Also had a look at Rantzen's "National M.E. Centre and Centre for fatigue syndromes" page. *So* damaging for the cause, as she manages to repeat pretty much every myth about M.E. that exists, including that "it is a fluctuating disorder of energy control" (!) and that M.E. is associated with fibromyalgia, and that it is... See more an umbrella diagnosis, that those with it just take longer to recover from activity (nothing about over-activity being actually dangerous for PWME and causing measurable harm), that most people recover from it quickly (nothing about there being actual damage to the brain-stem - probably acknowledging that would get in the way of promoting 'cognitive'-based "cures"), nothing about cardiac and cardiovascular complications (which are pretty inevitable for those patients who have been misled into following Rantzen's 'helpful solutions'), and the acceptance of the Fukuda CFS definition as describing M.E., whereas it is obviously mutually exclusive with M.E.! So angry - what a self-promoter.

But it's good to know about people like her and their "campaigning" ...
 
On the case of Lynn Gilderdale, this bit from Anne Atkins, "But her illness was ME, little understood and subject to the most bizarre surprises – including overnight cures" is not at all going to help people understand the wealth of research that there already is about M.E., nor how much ... permanent damage sufferers like Lynn have accumulated, making "miracle cures" not very realistic. And the way she so blithely ignores the reality of M.E., citing her husband's case, where he was cured by a psychiatric programme!!!! and so clearly did not have M.E., and that young man who clearly had only very limited brain damage and so had a quality of life that was very qualitatively different from Lynn's.

Sadly, with some people, their "passionate" need to commentate on questions of vital importance to others lives is far greater than their understanding of their responsibility to inform themselves thoroughly first!!!
 
Ginny

Lightning 'therapy' letters by Dr John Greensmith

Tamworth Herald Letters.
 
That there seems to be nothing physically wrong with you after having "been prodded and poked and had endless tests" ( Using Your Body To Learn How To Banish Unexplained Pain, Tamworth Herald, 19 July 2007), is no assurance that there is nothing physically wrong with you that has been missed, or is not yet known about.
 
Reverse Therapist Justin Kite joins those who assume that, if a physical cause is not yet known about an illness, it must be of psychological origin rather than that the physical one remains to be discovered.
 
Since we know that M.E. (Myalgic Encephalomyelitis) is a neurological illness and there is no evidence of a greater incidence of psychiatric history among M.E sufferers than in the general population, there is no good reason to think that he will be able to talk it better, any more than he could someone's broken leg, or make them feel more positive about having it.
 
Orthodox medicine may not yet be able to cure M.E. but there's no evidence that alternative treatments can succeed where orthodox have failed either.
 
Apart from the cost which, at £80 and more and hour, is more than some M.E. sufferers, on benefits, have to live on for a week, there can be the disappointment when it doesn't work for them. No one - apart from a real charlatan maybe - promises a cure but just offering hope of improvement that doesn't come at all, or last if it does, can cause distress, even suicidal thoughts, in those who have had their expectations raised many times then dashed.
 
Reverse Therapy is one of a number of radical treatments - others include Mickel Therapy, The Lightning Process and Emotional Freedom Techniques - which have no scientific validity or reliability and depend on belief to get better. Thus, if after treatment, the patient says they feel better, the therapist claims success for it but if they say they are no better, it may be said that they were negative, or somehow not right for it.
 
There is a worrying trend of people who claim to have had M.E., having tried everything, discovering one of these treatments, being sceptical at first but trying it and then - no one was amazed more than they were - they were cured, or at least had improved dramatically. Now, they have trained to be a therapist to offer the same to other sufferers, in a kind of pyramid healing process. Uncritical news articles, all over the country, are good adverts for business.
 
If any of these treatments worked at all, we should expect to find clusters of success around the therapists or geographical areas in which they are practised and, by contrast, people languishing ill where they are not. There is no such evidence. If Justin's claim of an 80% success rate were credible, we should expect numbers of chronically sick people to be tumbling. That isn't happening either.
 
It would be better to have no treatment at all than one which does you or your wallet no good at all.
 
ME Free For All.org is gathering evidence for a thorough appraisal of all these treatments - orthodox and alternative.
 
Yours sincerely
 
Dr John H Greensmith
 
ME Free For All.org
 
 
 
Sussex Argus Letters.
 
We always welcome news that any M.E. sufferer has recovered or improved and we wish Chloe Cross sustained recovery and continued improvement for the future (Road to recovery, Sussex Argus, 21 May 2007) but we go further than the local Sussex M.E. Group, whose spokesman David Butler (Letters, 23 May 2007) warns that the Lightning Process does not work for everyone with M.E. and that some may relapse after it.
 
If the Lightning Process works at all, for any of the vast array of illnesses it claims to help, we do not believe it will be of any value to people with Myalgic Encephalomyelitis, which is often carelessly bundled in with all other chronic fatigue illnesses, under the catch-all Chronic Fatigue Syndrome.
 
As with several other radical treatments (including Reverse Therapy, Mickel Therapy and Emotional freedom Techniques) there is, as some admit on their own websites promoting it, no reliable scientific evidence to support its underlying theories and it relies on belief in it to work.  Thus, if the patient says they feel better after treatment, it is possible to claim success for the treatment but, if the patient says they do not feel better, it can be claimed that they did not have sufficient faith or were, somehow, not quite ready.
 
There is a worrying trend of self-promotion by people, who claim to have been cured by one of these radical treatments, then going on to train as therapists to treat others themselves, in a kind of pyramid healing process.
 
Recommendation by patient testimonial is likely to be heavily distorted in the treatment's favour. Those patients who say they did well, or who are going on to train as therapists, will obviously sing its praises but those patients who did not improve may not be well enough to speak out against it, or may fear doing so, especially if they are harassed with threats of writs for libel if they do.
 
A session costs as much for 1 hour as some M.E. sufferers, on benefits, have to live on for a week.  If any M.E. sufferer is considering putting that sort of money into unproven treatment, may we suggest they divert it to a serious biomedical research fund of an M.E. organisation.
 
Yours sincerely
 
Dr John H Greensmith
 
ME Free For All.org
 
 
 
*Letters - Sussex Argus*.
 
Whether former city financier Maurice Humphrys ever had M.E. (*Myalgic Encephalomyelits*), or some other illness brought on by fatigue or stress -which, incidentally, are often wrongly presumed to be inevitable prerequisites, since many M.E. sufferers never had them, nor have them now he has certainly recovered his ability to make money (*ME sufferer praises £500 therapy, Sussex Argus, 21 February 2008*).
 
Maurice is the latest in a line of people, around the World, to use a newspaper article to claim a cure for M.E. as a result of a radical treatment called the Lightning Process. Like them, he was so amazed and impressed, he has trained to offer the same to others, in a kind of pyramid selling healing plan.
 
Sadly, people who have been desperately ill for decades and tried everything going are easy prey for any straw offered, suspend their critical faculties and part with money they can ill-afford. Incidentally, although a figure of £560 is typically charged, we have heard of much larger sums changing hands.
 
An hour's session costs as much as M.E. sufferers, on benefits, have to survive on for a week and need more for essentials than the therapist does for luxuries, or Phil Parker, the founder, does in franchise commission.
 
There is no independent scientific evidence for the treatment practised by this secretive group. There are only recommendations from those who claim to have been helped by it but not a word from any dissatisfied customers, who may be too ill to speak out, or fear the consequences if they do.
 
By putting the onus on the patient to believe in getting better, Lightning Process advocates have it both ways: if the patient says they have recovered, they claim success for the process; if the patient says they have not improved, it can be said they were negative, or somehow not ready for it.
 
This organisation joins with other M.E. support groups in advising against all unproven treatments, which may have no lasting benefit or, in some cases, do harm.
 
Yours sincerely
 
Dr John H Greensmith
 
ME Free For All. org
 
 
 
*Letter to the Editor of The Glasgow Herald, Charles McGhee*.
 
Cc: Martin Greig, Sports Writer.
 
I hope - in the interests of seeing all sides of an argument and because the consequences for M.E. sufferers could be so serious, even potentially harmful - that you will allow the same space and prominence to my response, as you did to Martin Greig's article, promoting Mickel Therapy and the talk to be given by it's inventor, Dr David Mickel, in Glasgow, on Saturday 17 May 2008 (*My body told me to rest: I got better by doing the opposite, Glasgow Herald, 28 April 2008*), which prompts it.
 
Before embarking on any course of treatment - including Mickel Therapy - M.E. (*Myalgic Encephalomyelitis*) sufferers would be well advised to weigh up what is known about the therapy being offered and learn from other areas of medicine in order to better understand any possible risks or consequences.
 
It is a quite legitimate, understandable, early step in any scientific enquiry to set out with a theory. The traditional approach is to test a hypothesis and, once it has been proved valid and reliable, with a high degree of probability of repetition, usually 95% or 99%, accept that the suggested treatment is appropriate and safe. Often, treatments are tested thoroughly under laboratory conditions, or on animals, before they are given to patients, to maximise safety.
 
In M.E. research, the approach has too often been to skip the testing and expect M.E. sufferers to be guinea pigs (for example in the PACE -* Pacing, graded Activity and Cognitive behaviour therapy: a randomised Evaluation*and FINE - *Fatigue Intervention by Nurses' Evaluation* - trials, which are being carried out on patients before the results are in and have been assessed, a practise which would be unethical in some drugs and animal experiments).
 
No one, as yet, has a cure for M.E. but some people claim to have treatments which "help" people with M.E., though the ways in which this help are clearly observable, such as a return to some measure of a previously healthy life, like returning to work or school, are not always obvious.
 
When people have been ill for long periods of time and have tried everything suggested without success, they tend to be less critical of and take bigger gambles with, more radical treatments. There is, undoubtedly, an opportunity for charlatans but, even when the practitioners are well-intentioned, reputable and honourable, they only have a theory. Interestingly, the advocates of different radical treatments advance different theories of M.E. with equal firmness that theirs is the correct one - the hypothalamus (Mickel Therapy), amygdala (the Gupta Programme), adrenaline (the Lightning Process) - yet they all remain unproven theories.
 
No one - not even the practitioner - knows how they work. There is no scientific evidence for them. They are not approved by any medical organisation. They have not been independently reviewed and rely only on recommendations from people, who claim it has helped them, not balanced by any dissatisfied customers, who may be too ill to speak out or fear the consequences if they do. They are often, quite secretive, pyramid-sold treatments, practised by a motley crew of people with disparate, indefinite, qualifications, such as 'life coach'. There are no follow-up studies, or statistics available, to check  whether M.E. sufferers relapsed; anecdotal evidence suggests that many do. A single session often costs as much as some people, on benefits, have to manage on for a week. They rely on faith and put the responsibility to get better squarely on the patient. Thus, if the M.E. sufferer says they feel better, success is claimed for the treatment but if they say they have not improved, it may be said the patient was somehow negative or not ready for it.
 
In other areas of medicine, treatment is given even when the causes of an illness are not fully understood and the scale of possible side effects of treatment is unknown. The stakes are high. For example, we are now seeing some of the undesirable after-effects of chemo- and radiotherapy; I'm sure that the people behind Thalidomide had nothing but good intentions; frontal lobotomies seemed a good idea at the time. This is not scaremongering. We know, for sure, these things happen; we do not know, for sure, how many cases there are of damaged M.E. patients and whether any improvements would have been achieved without any treatment at all.
 
It is probable that there are many more M.E. sufferers, who have been badly affected by a particular treatment than we know about because the victims are too ill, after it, to speak out; some are daunted by the energy required to respond publicly; some fear threatened litigation, even bullying. We simply don't know the figures because the work hasn't been done. Furthermore, claims of success for M.E. patients do not take account of later relapses, again because follow-up studies have not been done and the statistics are not available.
 
It is also possible that the success doesn't belong to the therapy claiming it because the patient may not have had M.E. at all but some other illness misdiagnosed. Or, credit may, instead, belong to some other intervention taken simultaneously, which has not been considered, in a multivariate analysis. Or, improvement may be due to the passage of time, during which resting has had an ameliorative effect. Indeed, pacing is recommended as the treatment most likely to show a beneficial effect by most M.E. sufferers, though it does require discipline and is easier said than done.
 
For some, it's too late once the damage is done. Patients considering any exercise treatment, even in clinics with recommended therapists, should take note of the experience of M.E. sufferers who had well-meaning advice from GPs to exercise and finished up in wheelchairs, or bed bound, from which they have not recovered their previous level. There is also experimental evidence, in this country and in Belgium, that even the more orthodox recommended treatments have no lasting benefit for people with M.E, or leave some irrecoverably worse than before.
 
 The advice of this Research Psychologist and 20-year M.E. veteran is that it is better to have no treatment at all than one which does you no good, or leaves you worse after it. Remember, the burden of proof is on those recommending the treatment, not for patients to acquiesce for any other reason than firm evidence.
 
Yours sincerely
 
Dr John H Greensmith
 
ME Free For All. org
 
 
 
*Lowestoft Journal Letters*.
 
The Lightning Process may well be "thriving" because of the free advertising it is getting in articles such as this one (*Ex-sufferer champions ME therapy, Lowestoft Journal, 20 June 2008*), featuring Kate Simpson, who sells it on, in pyramid-fashion, after claiming that it brought recovery, at a quite miraculous speed, when all other treatments had failed.
 
There is no reliable scientific evidence that the Lightning Process works for any of the conditions listed on its website but it is especially doubtful for M.E. (Myalgic Encephalomyelitis), an acknowledged neurological illness, which it heavily exploits with before/after treatment photos in its advertising campaign. The majority of people with the diagnosis M.E. would be able to be amongst those who "travel all over the UK and from abroad" because 25% of them are housebound, or bedridden and the remainder are mostly just not that mobile and are, therefore, it is unlikely that they would "get well with us."
 
It is unknown and unexplained how the Lightning Process works; it is not approved by any orthodox medical organisation; it has not been independently, scientifically, tested but relies, one-sidedly, on references from former patients - sometimes now turned trainers - who say it worked for them. It is practised by a disparate group of people with diverse and vague qualifications, such as  "Life Coach" for example, with no recognised universal standards. The trainers, who are franchised by Lightning Process inventor Phil Parker, in return for a training fee and a percentage of the take, appear to be sworn to secrecy about what will happen in a session, until the patient parts with the money. It's quite a costly business. A session costs as much per hour as some people with M.E., on benefits, have to live on for a week. The final total figure, most often quoted, is £560 but we have heard of people who have paid much larger sums. The Lightning Process relies on faith and on cooperation by the patient so, if the patient says they improved, it is possible to claim success for the Lightning Process but, if the patient complains they are no better, it is possible to say that they were uncooperative or somehow not ready for it. Perhaps, worst of all,it offers false hope that will not be realised in most cases. Lightning Process advocates appear to be equally secretive about the success rate, without relapse, compared with those who remain so ill with M.E. that they may be discounted from the statistics.
 
Yours sincerely
 
Dr John H Greensmith
 
ME Free For All. org
 
 
 
For more by Dr Greensmith, see: http://www.mefreeforall.org

Comments on Lightning by John Sayer

Hi,

Esther Ranzten writes:

 'But would I ever be able to control my hysteria? Neuro-linguistic programming may be the answer. That's a way of using your brain to re-programme the gusts of adrenaline in order to control terror so it doesn't turn into panic. I'd never tried it myself, but I have great faith in The Lightning Process, whose inventor, Phil Parker, cured my daughter of the chronic fatigue that had engulfed her for 14 years.

Last month I joined his class, and learned the techniques. If I remember to apply them when the moment arises, perhaps they will protect me from making a fool of myself when I'm thrown off a cliff on the end of a piece of elastic. Perhaps.'

So there we have it: Esther Ranzten's daughter didn't have M.E. after all - she'd been suffering from chronic fatigue for 14 years.

(One assumes LP is going to help Esther survive the new series of "I'm A Celebrity...")

BW

John Sayer

 

LP DOESN'T WORK FOR ME

This web page has been created as a place for people to record, in the public interest, their misgivings about LP and/or its failure to 'cure' them.

Contributions should be e-mailed to: john23@sayer.abel.co.uk

Please contribute if you have relevant information.

To read contrubutions made so far see: http://www.sayer.abel.co.uk/LP.html

More comments on Lightning 'therapy' etc.

M.E. and the ethics of testing on sick kids on Indigo Joe Blogs

A step by step account of what happens on the Lightning Process (and why it doesn't work) by Sally

A comment from Lesley: We already know the Lightning Process is rubbish, but just in case we need some 'authority' on this, Neil Abbott of MERUK said that there is no evidence that it helps ME patients.

'Dr Neil Abbot, director of operations at ME Research UK, is sceptical
about adrenaline playing a role in the condition. 'We should like to
see some evidence that there is an adrenaline rise in ME sufferers,
and if there is, whether lowering adrenaline induces a "lightning"
cure,' he says.'

(In other words, he's saying there's no evidence for the scientific claims of LP.)

This quote by Abbot has been given in many places.

Close your eyes and choose from:

Cognitive Behavioural Therapy
Reverse Therapy
Psychotherapy
Lightning Process
Pacing therapy
Mickel Therapy
Positive Thinking
Basic Relaxation
The Perrin Technique

Just look at all those cookies to choose from.

All based on 'I believe' not 'Biomedical research has established'

Jill C.