Kindly asking for help :)

I wanted to introduce myself because I am hoping some of you will be able to help me; in fact we may be able to help each other. My name is Wendy Turner and I am also a sufferer of M.E which I have had in varying degrees since childhood. Thankfully due to lots of different healing and changes in my life I have almost recovered.

I am a Complementary therapist (my therapies include: hypnotherapy, time line, regression, EFT and cognitive therapy) I help adults and children with M.E / CFS / Fibromialgia and because I have lived the M.E journey and recovered from it, it is my absolute delight and passion to help others do the same.

This is where I need your help; I want to understand exactly what help children and parents need so that I can be of the most help to this group of people.

I will be posting a short survey within the next two days and would be so grateful if you could take a couple of minutes to fill this out if you have children with CFS (or know people who have children with the condition) As a thank you I will be offering some complementary hypnotherapy CD's that I think may be of great use to you.

In the mean time, I would be really happy to offer you any help I can, so please do ask questions. Having lived this myself I know hos stressful and devastating and scary it can be. Between myself and my network of recoverers and other professionals I will help as much as I can so I really look forward to your help and questions.

Jennifer,

Have you the permission of the forum owner to post here?

I have to be honest that I find your approach very odd in a way. You claim to have had ME and now you make a living selling therapies that in my experience don't help with making even the start of a recovery.

You ask for help but it isn't clear that you are after. Why would you want to do a survey and why do you think people would want hypnotherapy CD's?

need biomedical research, and funding for biomedical research. and doctors to know about the biomedical research which already exists.

that is exactly what people with ME/CFS and people with FM need.

also need support navigating difficult medical and social systems, which are misguided as to the nature of the diseases we have, and which may be hostile towards patients, especially those who dare to posit a biomedical causation of our own disease.

Assessment and Treatment of Patients with ME/CFS: Clinical Guidelines for Psychiatrists. Eleanor Stein, MD, FRCPC. 2005. This guide explains differences between CFS/ME and mental disorder symptoms, and provides guidelines for helping patients cope with CFS/ME.
http://sacfs.asn.au/download/guidelines_psychiatrists.pdf

that should answer your questions about what ME/CFS patients need from mental health professionals and what sort of cognitive therapy can be beneficial

the remainder explain the diseases of ME/CFS and FM (which, despite your diagnosis--probably a misdiagnosis--of ME, I think you may be confusing with the symptom of chronic fatigue which can be caused by many different things... of course, this is a very normal thing to do--even the health authorities confuse the symptom and the disease. But, now you know better. )


Carruthers, et al. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols. J CFS 2003. 11(1) http://www.co-cure.org/ccpccd.pdf

Brown MM, Brown AA, Jason LA. "Illness duration and coping style in chronic fatigue syndrome." Psychol Rep. 2010 Apr;106(2):383-93. PMID: 20524538

Christodoulou, Deluca, Johnson, Lange, et al. Examination of Cloningers Basic Dimensions of Personality in Fatiguing Illness: Chronic Fatigue Syndrome and Multiple Sclerosis. J Psychosom Res. 1999 Dec;47(6):597-607. PMID: 10661606

Taylor RR, Jason LA. "Sexual abuse, physical abuse, chronic fatigue, and chronic fatigue syndrome: a community-based study." J Nerv Ment Dis. 2001 Oct;189(10):709-15. PMID: 11708672

Fossey et al. "Sleep quality and psychological adjustment in chronic fatigue syndrome." J Behav Med. 2004 Dec;27(6):581-605. PMID: 15669445

Maes M, Twisk FN. "Chronic fatigue syndrome: Harvey and Wessely's (bio)psychosocial model versus a bio(psychosocial) model based on inflammatory and oxidative and nitrosative stress pathways." BMC Med. 2010 Jun 15;8:35. PMID: 20550693

Hooper M. "Myalgic encephalomyelitis: a review with emphasis on key findings in biomedical research." J Clin Pathol. 2007 May; 60(5): 466-471. PMC1994528

Fletcher MA, Zeng XR, Maher K, et al. "Biomarkers in chronic fatigue syndrome: evaluation of natural killer cell function and dipeptidyl peptidase IV/CD26." PLoS One. 2010 May 25;5(5):e10817. PMID: 20520837

Peckerman A, LaManca JJ, Dahl KA, Chemitiganti R, Qureishi B, Natelson BH. "Abnormal impedance cardiography predicts symptom severity in chronic fatigue syndrome." Am J Med Sci. 2003 Aug;326(2):55-60. PMID: 12920435
The ones with post-exertional malaise are the ones with ME/CFS. The others have chronic fatigue for some other reason.

Kogelnik AM, Loomis K, Hoegh-Petersen M, Rosso F, Hischier C, Montoya JG. "Use of valganciclovir in patients with elevated antibody titers against Human Herpesvirus-6 (HHV-6) and Epstein-Barr Virus (EBV) who were experiencing central nervous system dysfunction including long-standing fatigue." J Clin Virol. 2006 Dec;37 Suppl 1:S33-8. PMID: 17276366

Light AR, Bateman L, Jo D, Hughen RW, Vanhaitsma TA, White AT, Light KC. "Gene expression alterations at baseline and following moderate exercise in patients with Chronic Fatigue Syndrome, and Fibromyalgia Syndrome." J Intern Med. 2011 May 26. doi: 10.1111/j.1365-2796.2011.02405.x. [Epub ahead of print] PMID: 21615807

Nicolson GL, Gan R, Haier J. "Multiple co-infections (Mycoplasma, Chlamydia, human herpes virus-6) in blood of chronic fatigue syndrome patients: association with signs and symptoms." APMIS. 2003 May;111(5):557-66. PMID: 12887507

VanNess MJ, Snell CF, Stevens SR. "Diminished Cardiopulmonary Capacity During Post-Exertional Malaise." J CFS Vol 14(2) 2007. haworthpress.com doi:10.1300/J092v14n02_07

Reduced functional capacity and post-exertional malaise following physical activity are hallmark symptoms of Chronic Fatigue Syndrome (CFS). That these symptoms are often delayed may explain the equivocal results from clinical cardiopulmonary exercise testing with CFS patients. ... For test 2 the CFS patients achieved significantly lower values for both VO2 peak and AT (anaerobic threshold). ... A second test may be necessary to document the atypical recovery response and protracted malaise unique to CFS.

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Schutzer SE, Angel TE, Liu T, Schepmoes AA, Clauss TR, Adkins JN, Camp DG, Holland BK, Bergquist J, Coyle PK, Smith RD, Fallon BA, Natelson BH. "Distinct cerebrospinal fluid proteomes differentiate post-treatment lyme disease from chronic fatigue syndrome." PLoS One. 2011 Feb 23;6(2):e17287. PMID: 21383843

Streeten DH, Anderson GH Jr. "The role of delayed orthostatic hypotension in the pathogenesis of chronic fatigue." Clin Auton Res. 1998 Apr;8(2):119-24. PMID: 9613802

Sheedy JR, Wettenhall RE, Scanlon D, Gooley PR, Lewis DP, McGregor N, De Meirleir KL, et al. "Increased d-lactic Acid intestinal bacteria in patients with chronic fatigue syndrome." In Vivo. 2009 Jul-Aug;23(4):621-8. PMID: 19567398

Lerner AM, Lawrie C, Dworkin HJ. Repetitively negative changing T-waves at 24-h electrocardiographic monitors in patients with the chronic fatigue syndrome (left ventricular dysfunction in a cohort). Chest. 1993; 104:1417-1421. PMID: 8222798

Kerr JR, Komaroff AL, Chia JK., et al. "Antibody to parvovirus B19 nonstructural protein is associated with chronic arthralgia in patients with chronic fatigue syndrome/myalgic encephalomyelitis." J Gen Virol. 2010 Apr;91(Pt 4):893-7. PMID: 20007355

Jammes Y, Steinberg JG, Mambrini O, Brgeon F, Delliaux S. "Chronic fatigue syndrome: assessment of increased oxidative stress and altered muscle excitability in response to incremental exercise." J Intern Med. 2005 Mar;257(3):299-310. PMID: 15715687

Whistler T, Jones JF, Unger ER, Vernon SD. "Exercise responsive genes measured in peripheral blood of women with chronic fatigue syndrome and matched control subjects," BMC Physiol. 2005 Mar 24;5(1):5. PMID: 15790422

Barnden LR, Crouch B, Kwiatek R, Burnet R, Mernone A, Chryssidis S, Scroop G, Del Fante P. "A brain MRI study of chronic fatigue syndrome: evidence of brainstem dysfunction and altered homeostasis." NMR in Biomedicine. published online: 11 MAY 2011

Spitzer AR, Broadman M. "Treatment of the narcoleptiform sleep disorder in chronic fatigue syndrome and fibromyalgia with sodium oxybate." Pain Pract. 2010 Jan-Feb;10(1):54-9. PMID: 20629967

Guilleminault C, Poyares D, Rosa A, Kirisoglu C, Almeida T, Lopes MC. "Chronic fatigue, unrefreshing sleep and nocturnal polysomnography," Sleep Med. 2006 Sep;7(6):513-20. PMID: 16934523

Milhaylova I, et al. Decreased Expression of CD69 in CFS in relation to inflammatory markers: evidence for a severe disorder in the early activation of T lymphocytes and natural killer cells. Neuro Endocrin Lett. 2007 Aug;28(4):477-83. PMID: 17693977

http://chronicfatigue.stanford.edu/

http://www.prohealth.com/library/showarticle.cfm?libid=16320

Ang DC, Moore MN, Hilligoss J, Tabbey R. "MCP-1 and IL-8 as Pain Biomarkers in Fibromyalgia: A Pilot Study." Pain Med. 2011 Jun 30. doi: 10.1111/j.1526-4637.2011.01179.x. [Epub ahead of print] PMID: 21714842

Traynor LM, Thiessen CN, Traynor AP. "Pharmacotherapy of fibromyalgia." Am J Health Syst Pharm. 2011 Jul 15;68(14):1307-19. PMID: 21719591

Staud R. "Sodium oxybate for the treatment of fibromyalgia." Expert Opin Pharmacother. 2011 Jun 16. [Epub ahead of print] PMID: 21679091

Castro-Snchez AM, Matarn-Pearrocha GA, Arroyo-Morales M, Saavedra-Hernndez M, Fernndez-Sola C, Moreno-Lorenzo C. "Effects of myofascial release techniques on pain, physical function, and postural stability in patients with fibromyalgia: a randomized controlled trial." Clin Rehabil. 2011 Jun 14. [Epub ahead of print] PMID: 21673013

Bernardy K, Fuber N, Klose P, Hauser W. "Efficacy of hypnosis/guided imagery in fibromyalgia syndrome - a systematic review and meta-analysis of controlled trials." BMC Musculoskelet Disord. 2011 Jun 15;12(1):133. [Epub ahead of print] PMID: 21676255

RESULTS: Six CTs with 239 subjects with a median of 9 (range 7-12) H/GI-sessions were analysed. [Hypnosis/Guided Imagery] The median number of patients in the H/GI groups was 20 (range 8-26). Three studies performed follow-ups.

H/GI reduced pain compared to controls at final treatment (SMD -1.17 [95% CI -2.21, -0.13]; p= 0.03.

H/GI did not reduce limitations of HRQOL [health-related quality of life] at final treatment (SMD -0.90 [95% CI -2.55, 0.76]; p=0.29) compared to controls.

Effect sizes on fatigue, sleep and depressed mood at final treatment and follow-up and on pain and HRQOL at follow-up were not calculated because of limited data available.

The significant effect on pain at final treatment was associated with low methodological and low treatment quality.

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Sorry, but I do not expect hypnotherapy, regression therapy, or similar, to be helpful for ME/CFS or fibromyalgia patients in general.

Jennifer,
Not to be rude, but I feel the same as ukxmrv. We are a close knit group, and your presence here makes me uncomfortable, as I do not understand why you are here except for your own personal gains. We are Ill, thank you very much.

I wasn't going to post a response, but I find myself unable not to.

this place gets more weird everyday -

have I entered an alternative reality?

strange.

I'll wake up in a minute - hopefully

Ok, I can't stop myself - 'time line regression' -

Good luck Ms Turner. - Have you tried the MRC? Sounds like something they would fund.

Glad you have 'recovered'!

Go Norway!

by the way - Ms Turner, please do not judge the whole of this community by my initial and slightly cynical response - you may well find a warmer welcome from others - however, freedom of speech and such other 'rights' being granted to all, (unless the thread is locked and disappears) - no thanks.

Max, thanks for the laugh.

apparently nothing cures neuroimmune disease faster than a good tap on an accupuncture point!!!

erm...but hold on, even Gary Craig (the originator of this lunacy) only claims it's effectiveness in treating 'emotional issues', so your claimed use of it to cure ME would imply you think ME is an emotional issue.

did anyone hear that duck?

edit

definately quack spam, see
http://www.healers.co.uk/fullpage.php?ckey=947
http://www.wendyturner.co.uk/
same name, same phone number, same 'services' as above, not one single mention of ME.
uses the same aggressive marketing and reselling/training methods as a lot of this type of wacko's use.

We just got promoted to be the next lot of mugs Ms Turner thinks are good for a few quid, yippee for us

"hearing the duck" and thx to Madie and max for a belly laugh.

Yes, I'll try the "time line, and the regression", and how much does the CD cost? LOL

Willow,
she has another thread as well!!!!!

Gosh you put energy into your post in defending us...Thanks.

Enough said....we do NOT need mental health practioners...and how dare you further traumatize any of us insinuating we need mental health therapies...wierd ones to boot!


Quick note to avoid confusion: threads have been merged

ME/CFS/Fibromyalgia Recovery Programme. The Chrysalis Effect

Here's a couple of videos which "somewhat" explains what Jennifer's program seems to be centered around. Jennifer, please correct me if this is incorrect.

4-Minute Video:

ME/CFS/Fibromyalgia Recovery Programme. The Chrysalis Effect

6-Minute Video:

The Chrysalis Effect Supported Recovery Programme for M.E,CFS & Fibromyalgia

I'm surprised by the approach of this thread and this "offer". I would have expected somebody who has experienced ME/CFS for many years to be much more aware of how this offer might affect us. It seems to further the already widespread perception that ME/CFS is a psychological illness and I doubt there is a single member on this board who believes way.

Wayne

If you are geniunely wanting to help others... can you please clarifiy what kind of ME (Wesselly version) you have? or do you fit what the canadian consensus definition of ME/CFS? Is it the English version of ME you had??? If so I can completely understand how you may believe you can help others a lot by things like CBT etc. Do you understand what Im refering to with all this?

You possibly need to educate yourself that there is completely different kinds of CFS and ME and what you had may not be at all what most others here have. Did you have abnormalities showing up on your tests??? eg abnormal Romberg test, abnormal tilt table test etc etc ... Im curious what abnormalities you had if any???

Sorry to ask all these questions but I do think if you want to be helping us and making money out of wanting to help us.. that you should explain more of where exactly you are coming from cause saying you had ME dont explain which illness you had (in ones head one or a more physical neurological kind of ME which sometimes happens with epidemic outbreak)

Im not against using things like hypnosis in ME (of the not just in the head variety) as long as its used knowing it cant cure the illness but rather for something like to lessen some pain or to try to help "co existing" depression that some have WITH the ME. The ME remains even after the depression goes.

If you are confused due to the hostility being given by people.. please stick around and learn more about this illness and the confusion around it, where you fit in with it and where others here fit and the differences

Now I understand the source of all my CFS problems! It must be because I was a type A personality in a past life and I haven't let go of my anxiety! If I sign up now, can I get a discount on making my boobs bigger using hypnotherapy?

This is where I need your help; I want to understand exactly what help children and parents need so that I can be of the most help to this group of people.

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What those with (historic kind of )ME need is
1/ Educated people around them so they can support them emotionally well. This I say is essential to have health professionals who properly understand the nature of true ME and that for many it is a severe progressive illness which may end up leading to earlier death due to organ failure, rare cancers etc.

2/ Educated people who understand that treating someone as if its just depression or psychological.. wont lead to a cure as true ME isnt curable by those methods.

3/ CBT of the kind which "validates" the ME suffers experiences and helps the person to live "within' their own limits (not CBT which tells a person they can overcome their symptoms but rather CBT which helps a person learn to live with the illness they have).

ME sufferers due to having a SERIOUS PHYSICAL illness could do with supportive counselling at times to help deal with the trauma they have with dealing with this illness and all the loss it causes in their lives and the trauma others cause them due to their disbelief. (hence I mention validation of their illness and a professional to be supportive and be hearing them out)

4/ EFT could help ME suffers with fears.. as anxiety is a feature of ME (one of many many different features so just a small part of it).. but fixing those fears wont cure the ME.

but yeah it could help but maybe some of the fears ME patients get are protective so actually good things eg distrust of doctors (maybe the suspicion a ME patient has with any new doctor is a good thing as it helps one to be more cautious with who is dealing with them. There are very good reasons why a ME patient needs doctor caution).

Maybe EFT could cure my fear of going out alone... but then what happens the next time I collapse cause Ive gone out (which is hard work on my body) alone and another person rings the ambulance due to Im out alone and collapsed???? Would it be rational to try to even take away the fear I now got of going out alone when i have very good reason to have it??? With EFT will you be trying to take away the fears that protect those who do have ME? (Do you really understand the illness enough to even know when you are? eg fear of exercise.. which is there in a ME person for a very good reason)

So Im wondering.. what fears are you planning to try to help ME people with?
(I can right now only think of one fear which is related to a person having ME to which it would be good to remove.. and that is the fear of standing up for oneself which many of us do have and saying NO I CANT do that to someone else)

good job, tania

it's a good point that most of the fears had by those with ME/CFS are very rational and serve a useful purpose.

the thing that's needed to relieve the situation is for medical professionals (and mental health professionals) to respect the disease and take it seriously as the biomedical condition(s) that it is (and the rest of society would generally follow the medical profession, which would also help considerably)

Spamola indeed!

I do believe she is referring to CFS/ME and not the real neurological disease ME. CFS/ME being the made up Wessely school syndrome.

http://hoopermedical.intodit.com/pag...cfs-and-cfs-me

The Difference between ME/CFS and CFS/ME

What the Wessely School refers to CFS/ME is, according to them, a condition of medically unexplained fatigue that is perpetuated by inappropriate illness beliefs, pervasive inactivity, current membership of a self-help group and being in receipt of disability benefits (PACE Trial Identifier, section 3.9) and it should be managed by behavioural interventions (CBT and GET). Simon Wessely believes that it is the same as neurasthenia: Neurasthenia would readily suffice for ME (Lancet 1993:342:1247-1248) and that attribution by patients to a virus is somatisation par excellence (J Psychosom Res 1994:38:2:89-98). The Wessely School believes that there are no physical signs of disease and assert that there is no pathology causing the patients symptoms, simply that patients are hypervigilant to normal bodily sensations (see below).

Whilst Wessely School psychiatrists continue to believe and teach (and advise Government agencies) that CFS/ME is a behavioural disorder that must be managed by behavioural interventions and incremental aerobic exercise (and which two of the PIs assert can be cured by those interventions), in reality true ME/CFS affects every system in the body and many physiological abnormalities have been documented.

From Wendy Turners website:

Anxiety and stress can be an unwelcome gremlin in your life and can cause all manner of frustration and difficulties. If you suffer from anxiety yourself, I'm sure you will agree with me.

You may suffer with:

Stressful/disturbed sleep
Frequent tiredness
Lethargy
Constant feeling of adrenaline
and perhaps many other things that I've not mentioned here.

By working with me, some of the wonderful changes you can expect are:

Greater confidence in yourself
Refreshing sleep
More energy
Feeling calmer and more relaxed throughout the day
plus many more benefits
I am passionate about helping people with these issues mainly because I suffered from all the above for many years, so I have a deep understanding of what you're going through.

It seems from her own admission that she was an anxiety sufferer. It may be that her approaches can help some people with anxiety issues and i wish her well with this, but solving my anxiety issues has not cured my M.E. If she had M.E i wonder why she is afraid to say so on her website.

Hi Listmates,

I just wanted to take a second and thank you for taking the time to answer this thread. You all covered everything I was thinking ...

tc ... x

Tulip, I just want to reply to this: "I do believe she is referring to CFS/ME and not the real neurological disease ME. CFS/ME being the made up Wessely school syndrome."

I live in the USA, have lived with CFS for 25 years, diagnosed using Canadian criteria. If I call my illness CFS/ME on this forum, out of respect for the posting population that lives outside of the US, I've apparently blundered into dangerous territory. I put CFS first because that's what it's called here, where I live.

I just want people to know that inside the murk that is my brain, this is the best I can do. I understand that there are political issues that effect all of us, around the naming of this illness. I just can't keep up with it all - not for lack of trying!