For the record, i havnt a clue whats going on with my signature
Be skeptical of the things you believe are false, but be very skeptical of the things you believe are true.
I think, in avoiding the shallow approach of "it's all in the mind" we must nonetheless recognise the important role of psychology.
ME has a lot to do with the immune system, as it worsens whenever one gets a commojn bug, cold, tummy upset etc which unlike other people has a much worse effect and takes weeks to recover. Echinacea which supports the immune system is a core aid in fighting ME.
The immune system in turn seems to be influenced by psychology. I have learned that it's important for me to cultivate positive attitudes. If I get stressed or depressed, particularly by others being unfair or cruel to me, the lurgy erupts. (That's one reason why attacks on us accusing us of faking are particularly worrying!)
Conversely if I can stay cheerful and optimistic I have a better chance of staying in control of the symptoms. There is I think no hope of clearing it all together but it IS possible to control its effects well enough to live an almost-normal life.
This interaction between mood and immune system can be accounted for hormonally. Similarly gentle exercise - even if only circling the ankles lying down! stimulates positive hormones.
All this is reinforced but what I've learned from other sufferers on the huge international networks of ME. Since we get little help, and often destructive input from medicals, the self help networks are vital to us. Frequently I dfind that I've worked out something that helps - like the mini-exercise efforts, then I hear it from other HE people (or vice versa), and THEN around 2 - 3 years later research lumbers along suggesting just this is a good idea.
The 'lightning treatment' sounds very like a fairly conventional stress treatment to me. That would make you feel better about many aspects of your life. If ME is psychological, the treatment could well be beneficial.
I think I might pass send the link to this thread to Steve Novella at SGU, just to see his take on it as a neurologist (+ I've looking for a reason to e-mail those guys...quite sad)
That isn't enough by a long chalk - there's a lot I have to do physically as well. Much of it is very mechanical indeed. Strict diet, exercise regime, it's as complicated as living as a diabetic.
When I've come across "psycholosomatic cures" they don't last very long at all. They can have fantastic effects but ...
They seem like hypnotising someone to stop smoking. It can work, and gives a useful boost to the effort to stop, a window of opportunity.
But then the underlying causes make themselves felt and the old habit reasserts itself. If the person doesn't use other methods as well hypnotism doesn't have a lasting effect.
Then there is also the virus in my blood. That ain't psych.
The immune system is being mentioned quite frequently in this thread, rightly so as this is indeed one of the main areas of research in CFS, however the bulk of the data are still in the realms of associations rather than cause and effect:
Brain Behav Immun. 2008 Dec 11. [Epub ahead of print]
Association of peripheral inflammatory markers with chronic fatigue in a population-based sample.
Raison CL, Lin JM, Reeves WC.
Department of Psychiatry and Behavioral Sciences, Emory University School of Medicine, 1365C Clifton Road, Room 5004, Atlanta, GA 30322, USA.
Alterations in the innate immune response may contribute to the pathogenesis of chronic fatigue syndrome (CFS). However, studies have been limited by small sample sizes, use of patients from tertiary care settings, inappropriate selection of controls, and failure to control for confounding demographic, medical and behavioral factors independently associated with immune activity. It is also not known whether specific symptoms account for observed associations between CFS and the innate immune response. To address these limitations, the current study examined plasma concentrations of high-sensitivity c-reactive protein (hs-CRP), white blood cell count (WBC) and a combined inflammation factor in a large population-based sample. Log-transformed mean plasma concentrations of hs-CRP were increased in subjects with CFS (n=102) and in subjects with unwellness symptoms that did not meet diagnostic criteria for CFS (defined as "insufficient fatigue" [ISF]) (n=240) when compared to subjects who were well (n=115). Log transformed WBC was increased in ISF and was increased at a trend level in CFS. The combined inflammation factor was increased in both CFS and ISF. Subjects with CFS and ISF did not differ on any of the inflammation measures. In the entire subject population, the physical component summary score (PCS), but not the mental component summary score (MCS), from the Medical Outcomes Study Short Form-36 (SF-36) was negatively associated with each of the inflammation measures. Depressive symptoms were also associated with increased log hs-CRP. After adjustment for age, sex, race, location of residence, BMI, depressive status and immune-modulating medications, subjects classified as ISF continued to demonstrate increased log hs-CRP, WBC and elevations on the inflammation factor when compared to well controls; however, associations between CFS and log hs-CRP and the inflammation factor were no longer statistically significant. After adjustment, PCS score also remained independently associated each of the inflammation measures. These findings support a role for innate immune activation in unexplained fatigue and unwellness, but do not suggest that immune activation is specific to CFS.
Pharmacogenomics. 2009 Jan;10(1):35-42.
A Bayesian approach to gene-gene and gene-environment interactions in chronic fatigue syndrome.
Lin E, Hsu SY.
Vita Genomics, Inc., Jung-Shing Road, Wugu Shiang, Taipei, Taiwan. email@example.com
INTRODUCTION: In the study of genomics, it is essential to address gene-gene and gene-environment interactions for describing the complex traits that involves disease-related mechanisms. In this work, our goal is to detect gene-gene and gene-environment interactions resulting from the analysis of chronic fatigue syndrome patients' genetic and demographic factors including SNPs, age, gender and BMI. MATERIALS & METHODS: We employed the dataset that was original to the previous study by the Centers for Disease Control and Prevention Chronic Fatigue Syndrome Research Group. To investigate gene-gene and gene-environment interactions, we implemented a Bayesian based method for identifying significant interactions between factors. Here, we employed a two-stage Bayesian variable selection methodology based on Markov Chain Monte Carlo approaches. RESULTS: By applying our Bayesian based approach, NR3C1 was found in the significant two-locus gene-gene effect model, as well as in the significant two-factor gene-environment effect model. Furthermore, a significant gene-environment interaction was identified between NR3C1 and gender. These results support the hypothesis that NR3C1 and gender may play a role in biological mechanisms associated with chronic fatigue syndrome. CONCLUSION: We demonstrated that our Bayesian based approach is a promising method to assess the gene-gene and gene-environment interactions in chronic fatigue syndrome patients by using genetic factors, such as SNPs, and demographic factors such as age, gender and BMI.
Neuro Endocrinol Lett. 2008 Dec 29;29(6). [Epub ahead of print]
Normalization of leaky gut in chronic fatigue syndrome (CFS) is accompanied by a clinical improvement: effects of age, duration of illness and the translocation of LPS from gram-negative bacteria.
Maes M, Leunis JC.
M-Care4U Outpatient Clinics, and the Clinical Research Center for Mental Health, Belgium.
BACKGROUND: There is now evidence that an increased translocation of LPS from gram negative bacteria with subsequent gut-derived inflammation, i.e. induction of systemic inflammation and oxidative & nitrosative stress (IO&NS), is a new pathway in chronic fatigue syndrome (CFS). METHODS: The present study examines the serum concentrations of IgA and IgM to LPS of gram-negative enterobacteria, i.e. Hafnia Alvei; Pseudomonas Aeruginosa, Morganella Morganii, Pseudomonas Putida, Citrobacter Koseri, and Klebsielle Pneumoniae in CFS patients both before and after intake of natural anti-inflammatory and anti-oxidative substances (NAIOSs), such as glutamine, N-acetyl cysteine and zinc, in conjunction with a leaky gut diet during 10-14 months. We measured the above immune variables as well as the Fibromyalgia and Chronic Fatigue Syndrome Rating Scale in 41 patients with CFS before and 10-14 months after intake of NAIOSs. RESULTS: Subchronic intake of those NAIOSs significantly attenuates the initially increased IgA and IgM responses to LPS of gram negative bacteria. Up to 24 patients showed a significant clinical improvement or remission 10-14 months after intake of NAIOSs. A good clinical response is significantly predicted by attenuated IgA and IgM responses to LPS, the younger age of the patients, and a shorter duration of illness (< 5 years). DISCUSSION: The results show that normalization of the IgA and IgM responses to translocated LPS may predict clinical outcome in CFS. The results support the view that a weakened tight junction barrier with subsequent gut-derived inflammation is a novel pathway in CFS and that it is a new target for drug development in CFS. Meanwhile, CFS patients with leaky gut can be treated with specific NAIOSs and a leaky gut diet.
Mol Med. 2008 Nov 16. [Epub ahead of print]
Transcriptional Control of Complement Activation in an Exercise Model of Chronic Fatigue Syndrome.
Sorensen B, Jones JF, Vernon SD, Rajeevan MS.
Division of Viral and Rickettsial Diseases, National Center for Zoonotic, Vector-borne and Enteric Diseases, Centers for Disease Control and Prevention, Atlanta, GA, USA 30333;
Complement activation resulting in significant increase of C4a split product may be a marker of post-exertional malaise in chronic fatigue syndrome (CFS) subjects. This study was focused to identify the transcriptional control that may contribute to the increased C4a in CFS subjects post-exercise. Differential expression of genes in the classical and lectin pathways were evaluated in peripheral blood mononuclear cells (PBMCs) using quantitative reverse transcription PCR. Calibrated expression values were normalized to internal (peptidylpropyl isomerase B [PPIB]) or external (ribulose-1,5-bisphosphate carboxylase/oxygenase large subunit [rbcL]) reference genes or geometric mean (GM) of genes ribosomal protein, large, P0 (RPLP0) and phosphoglycerate kinase 1 (PGK1). All nine genes tested, except mannose-binding lectin 2 (MBL2), were expressed in PBMCs. At 1 hr post-exercise, C4, mannan-binding lectin serine protease 2 (MASP2) and ficolin 1(FCN1 ) transcripts were detected at higher levels (>/= 2-fold) in at least 50% (4 out of 8) of CFS subjects that increased to 88% (7 out of 8) CFS subjects when subjects with over-expression of either C4 or MASP2 were combined. Only increase in MASP2 transcript was statistically significant [PPIB, p=0.001; GM, p=0.047; rbcL, p=0.045]). This may be due to the significant but transient down-regulation of MASP2 in control subjects (PPIB, p = 0.023; rbcL, p = 0.027). By 6 hrs post-exercise, MASP2 expression was similar in both groups. In conclusion, lectin pathway responded to exercise differentially between CFS and controls subjects. MASP2 down-regulation may act as an anti-inflammatory acute-phase response in healthy subjects, whereas its elevated level may account for increased C4a and inflammation mediated post-exertional malaise in CFS subjects.
The art of medicine consists in amusing the patient while nature cures the disease. Voltaire
[quote=Swiftlady;50489]I think it has a strong psychological component. I can certainly work on the physical effects and reduce them by working through my state of mind.
I have to say as an M.E sufferer I totally disagree. Unfortunately I was diagnosed age 11 when it was treated by health professionals as 'all in the mind'. As a consequense of this I saw my fair share of shrinks, and as I was so young I didnt think to question their methods. Anyway my point is I saw a therapist for about 3 years, who was a nice bloke but he couldnt make me better and had no real impact upon my health despite much positivity. Personally I feel that positive thinking and special diets are a bit of a cop out and appear mildly attention seeking. I am on an antibiotic treatment for cpn, which is pretty rough but I prefer feeling that I am tackling the issue head on. Other people should definately try it as it seems to the the only treatment with lasting success.
However I did not mean the crude approach of thinking positively as a helpful thing. Thats hopeless for ME or anything else.
If we don't clear out the root dirt throwing a pretty cloth on the floor is only a temporary fix at best, at worst useless.
By saying ME has a psychological component I meant all the work Ive done which is mental work.
Learning to manage my limits - stretching my ability just so far but NO further is a considerable mental skill.
Patience and determination.
Picking up and trying again - endlessly.
Handling dependency with dignity.
These are all part of the illness to me. But most of all learning to be acutely sensitive to tiny symptoms that signal onset of an episode. Learning WHY this is triggered, which often has emotional causes like when I take on too much responsibility.
The bug is physical. But like a great many illnesses it inflames through emotional triggers and can be controlled by emotional discipline.
Plus STRICT diet. Without my diet my body simply collapses.
And regular exercise within whatever limits I have TODAY. One day a time ion that definitely as today I can walk, swim, tomorrow I can hobble.
Im sorry, I didnt mean to offend or upset you. Im glad that you can use diet and other things to help you manage your condition. I dont know if you've heard of him but Dr Andy Wright has a theory about the illness and he is the person treating me. He's an NHS consultant who had M.E. himself and has been able to treat his condition, anyway it might be worth googling him. Best of luck in the future.
I have been diagnosed with ME, and although now its very offending when people say its a non existent disease. i was very naive about it, and the first thing i said like others, when the doctor first suggested it to me, was "so your saying im imagining it" but when i got home and researched it it fell in to place. bit like my daughter when the doctor first suggested autism, like everyone else that has no experiance of it, you just see classic autism on tv and think thats it, and i said "she hasnt got autism you can tell that by looking at her" again i got home researched it and again it fell into place. people say that to me all the time, and its hard not to be offended, but i have to remember i once said exactly the same thing. another thing that gets to me is when people say, well if you have that, it cant be that bad, i knew someone that had it and they was in a wheelchair. what people dont seem to realise is, people with ME are not in wheelchairs because they are paralised, its because it hurts when they walk, their knees and ankles give and they fall, and walking makes the condition worst. i am a single parent to high functioning autistic child, im no good to my daughter in a wheel chair, when shes running in front of a bus because theres a pigeon in the road. its like the lady before said, she couldnt pick up her child, but if she had to she would have lifted a car for her child, its the same thing. when my daughter needs to go to school, needs to be fed, needs clean clothes, i have to do it i have no choice, no on else is going to do it, and then you struggle to wake up in the morning and when you do your body is so stiff it hurts and you cant get out of bed, then you get social services threatening to take your child off you almost on a daily basis because im a hypochondriac, and im lazy because i dont get out of bed on time and my daughter is always late for school, and my house is not tidy enough and i have washing in the washing basket. which in turn makes you so stressed out, it makes your condition worst. it was a year and a half of hell before i was diagnosed. the condition is still bad, but learning to pace yourself and all the stress taken away, and the medication, has helped alot.
it feels like, if you dont do the right things or scream the right words, it cant be that bad. i remember when i was pregnant, i told the midwife, im really tired, and ive passed out a couple of times, she said to me, of course your tired, your pregnant. you carry on working and wanting to die your so tired, and thats fine and normal, because your not shouting loud enough, and then when it came to my routine bloods, it was 2 weeks late because the midwife forgot to refer me to the doctor, when they took my bloods, i was so severly anaemic, i have to have double the recommended dose of iron, and if it didnt pick up by the next day, i would have been rushed in to hospital for a blood transfusion. yet because i was still going to work and doing stuff, i must have been fine, when in reality no one else was going to pay for my babies stuff, i had no choice but to carry on. then when i gave birth, i was left for 4 days because my water wouldnt break, and on the forth day, i had to beg them to take me in a break my waters, or they would have left me for 2 weeks. so i went in and i asked for a epidural, oh no they cant do that till my waters are broken, so they break my waters, now can i have one, oh no, its way to soon your not dialated enough, your only 3 cm dialated you got at least 6 or 7 hours of dialting to go and then an hour of pushing, we have loads of time, we dont want to do it to soon. an hour later my daughters on the table and i have 3 doctors stood round me trying to work out how to stitch me back together, and to add insult to injury, because i didnt scream or shout, the cheaky mare said to me, oh you must have a really high threahhold for pain. sorry i know im ranting but i wish people would be a little more understanding, we dont all act the same.
although i have been diagnosed by a consultant with ME, i still wonder about it. not that it doesnt exist, but its sometimes a generic tag, because they cant or wont dig deeper into the issue. ive read alot of stories about people diagnosed with ME, and apparently "suddenly" developed a thyroid problem, arthritus etc, when the symptoms are the same as how your feeling when your diagnosed with ME. when i ask my doctor to test me for something, she once told me, i wont be happy till im diagnosed with something that requires me taking a pill or something to make me better, and shes damn right, i tend to feel a tad resentful at someone saying you got ME, here take prozac to feel a bit better and give you a bit more energy, make sure you rest and pace yourself, theres nothing else we can do, bbye, when i have a child to look after and a house to keep on top of, resting and pacing doesnt quite cut it. if they would exhaust every possibility i would then be happy with the diagnoses.
lol after all that ranting, i did actually find this forum readin up on the lightening process, i hope more people that have tried it come here and say something, its alot of money to spend if it doesnt work long term.
Last edited by Admin; 2nd March 2009 at 02:28 PM. Reason: Inappropriate content.
I've a friend with a bad case of ME who tried the course relatively recently. In her case it was money down the drain. It did appear to work for some others who were also having the treatment but they were not nearly as bad as my friend. She described it as a hotchpotch of every self-help and Eastern philosophy book going.
I have ME and have done the Lightning process, and I have to say its the biggest pile of dangeruos rubbish I have ever done. There are by and large 3 groups of people there, Manic Depressives, Anorexic girls, and people with high stress jobs that are still doing full time work that think they have an illness as serious as ME.
The group sessions rapidly move from what seems to be a training program into more an evengelical hallelujah you are saved kind of thing. Even those that really do have ME leave on a high of mass hysteria. I have now become aware of several people who really have had ME becoming seriously ill believing they can do more than their body really can.
It is absolutely disgraceful that a man, Phil Parker, can merely call himself some offical sounding name, become his own governing body and start claiming to treat and cure a very serious disease. In every other civilised country in the world this is a criminal offence. EVEN THE USA! The man should be behind bars. Indeed even in the UK it is a minor offence under the trades description act but those laws are never enforced.
The lightning process itself it merely to say STOP, change your body posture to the feelings you want, be it relaxed or energy (called congruance), tell your self you are a powerful genius and how great you are, then think of some memories to reinforce that.