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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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Optimum Health Clinic - anyone used or have an opinion?

Discussion in 'ME/CFS Doctors' started by Lae, Jun 11, 2012.

  1. Lae

    Lae

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    Hello everyone :)

    New member here, I've had ME/CFS for a long time now...first diagnosed 1999, relapsed 2007. Want to get better desperately etc etc, you know the rest!!!

    Two people my mother knows have had some success from the Optimum Health Clinic http://www.freedomfromme.co.uk/ . One went the psychology route, the other nutrition.

    I requested the info pack (including an annoyingly self indulgent DVD), and have my free 15minute chat with the psych lady later today and the nutritionist tomorrow.

    From what I have read some of their approaches seem interesting. I have certainly recieved no useful help from the NHS this time around now I am no longer a child or in a wheelchair, so my Mum and partner have very kindly set aside some money to spend on private treatment.

    A couple of things concern me though. Firstly is the fact that the owner Alex Howard seems to have many businesses such as Naked Buddha (app development), MeditationForLife, UltimateTherapistTraining (online teaching people to be NLP, EFT etc therapists), secretstorecovery.com (pay to get info about ME), ConsciousTransformation seminars, home study psychology courses and some corporate thing called thepearcompany.org! All with videos that are filmed in the same place. Some of the marketing employed seems a bit "scammish" to me, like "special reduced price for a limited time only" for the therapist training, the 90 day programme and also for secretstorecovery.

    Also, check this example of credentials of one member of the psych team:
    Dip.Clin.Hyp.NLP.Coach.EFT

    Looks impressive but basically means she has a diploma in clinical hypnotism, is an NLP coach and has done a course of EFT. No degree/formal training...should I be concerned? Admittedly some have other qualifications but the fact that a lot of the letters on the page are made up of short course qualifications sets alarm bells ringing.

    Also, the very fact that they use EFT and NLP concerns me. Aren't these discredited practices? Or am I being closed minded? :(

    I am quite encouraged by their nutrition section, but its still overseen by this Alex Howard guy who seems a bit dodgy to me somehow.

    Please tell me I am just being my usual cynical self. Its helped 2 people, so maybe it can help me? With the psychology side of things though I believe it can need a lot of faith to work and thats something I just don't have :(

    I'd love to hear some of your wise opinions!!

    Thanks,
    A new sleepyhead :)
     
  2. Jenny

    Jenny Senior Member

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    Hi Lae, and welcome!

    I've looked at what they do in some depth - in fact I'm part of a study where you do 8 weeks of their 'Secrets to Recovery' programme and any improvements are assessed with pre/post questionnaires.

    As you say their clinic is entirely based on psychological treatments and nutritional advice. I don't know about the qualifications of their nutritionists or the other staff who treat with psychological techniques, but although Alex has a degree in psychology I don't think he's a Chartered Psychologist recognised by the British Psychological Society. So he doesn't have a post-grad qualification recognised by the BPS. (As a psychologist myself I'm familiar with psychology qualifications.) He seems well-meaning, but seems more interested in being an entrepreneur these days.

    I signed up for the research study as they gave participants a lot of meditation material - I find meditation quite helpful on a short-term basis but get bored with listening to the same CDs over and over. This material is really quite good. I've done meditation for years though and there's no way it's going to be a cure!

    Listening to all the stuff I've been given, it's clear that they define the conditions they're treating as 'burn out'. They actually say as much. This is very different from ME, and so very different from the illness I have. It's possible they can help people with chronic fatigue though, either post-glandular fever, or arising from overwork etc - in fact many of their patients seem to fit this description.

    It's quite telling that amongst all the 100 hours of audio material I've been given there are no statistics describing the percentage of people they've seen who've improved or recovered!

    Jenny
     
  3. justy

    justy Senior Member

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    I think that is a very fair assesment form Jenny (and welcome by the way!) I ordered the pack, watched the DVD, had the free appointment, but decided against it. I had some testing doen withh Dr Myhill that showed i had a real physical illness and deficiences etc. I didnt feel therefore that thier psychological help would be any good to me. Their nutritional approach is very much the same as Dr Myhills - paleo, no wheat, grains etc, high antioxidant intake (B12, COQ10) mitochondrial support (magnesium, minerals etc) I dont feel that the nutritional stuff is any better than advice from any qualified nutritionist or any clued up member on here - so i guess im saying not worth the money.

    I dont know if Dr Myhill is still taking patients or if you can afford KDM in Brussels - but these would be my preffered options, rather than spending good money on NLP, mediation and nutritonal support.

    Alternatively you could see a nutritionist for help (although for me it hasnt really made any difference) or see a good integrative private doctor or a medical herbalist (has helped me quite a bit)

    For me. Dr Myhills advice and tests, supplements, herbs, diet, meditation and pacing/resting have been the best things so far - with some improvements but no cure yet!

    Good luck, Justy.
     
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  4. SOC

    SOC Senior Member

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    That sounds like an awful lot of money for the little benefit you're likely to get. The nutrition information is largely available on the internet one way or another, and meditation tapes are also available from other sources much cheaper. If it was me, I'd take the money and go see KDM or some other medical doctor that specializes in the physiological aspects of ME/CFS.

    I am assuming, of course, that you have ME, as opposed to burnout or depression. :) And even if you might be just burned out or depressed, it would be worth seeing an ME/CFS physician (not psychologist) to get a good diagnosis and appropriate medical tests before you submit to an expensive, primarily psychiatric treatment.
     
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  5. sianrecovery

    sianrecovery Senior Member

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    I did the 90 Day course at the OHC. without hotel costs, I think it was about £600. for nutritional help, I decided to go to Niki Gratrix, who set up their nutrition department and then decided to go solo. I've found Niki excellent. As for OHC, their fundamental model is that ME can be corrected via pyschological means. Their 90 course teaches the 'stop' method for interupting pessimistic, disease orientated thoughts, and emotional freedom technique tapping for energetically breaking up unhealthy patterns. They follow up with written work and conference calls for three months. All I can say, is that I think they mean well....but what they offered was extremely unlikely to rid me of the blood born infections I have since discovered, or the hypo thyroid, or the mito dysfunction...I absolutely understand there is a huge connection between thought, energy and physical health, but I really wish I had that £600 back so I could spend it on something more tangible. I have also been treated by doc Myhill, who I really like and respect and who helped alot. Yoga, meditation, mindfulness have helped me live with ME, as have Donna Eden energy medicine exercises. But they havent bloody cured me, and I think if you hope OHC will, you will probably be disappointed. I guess it all depends - if you are young, and you have just 'burned out' and you have no other complexity, maybe...I didnt fit any of those categories. A friend of mine who stayed with their nutritional dept after our course has to fair cleared an intestinal parasite, but its been a slow slow process and its cost her alot of money and time. I hope that helps. What helps one is not necessarily what helps another.
     
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  6. Lae

    Lae

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    Hi Jenny, Justy and SOC :thumbsup:

    Thanks for replying. I really do appreciate your input!

    I had my 15minute psych department chat and didn't feel especially satisfied by the answer the (very friendly and professional) lady gave RE the use of NLP and EFT practices. Interestingly, Jenny, she did use the word "burnout" twice in our conversation which I thought nothing of at the time until I read your post.

    Justy and SOC, can I ask for some more info about KDM? Does that stand for Kenny De Meirleir? I hadn't heard of him before and only found it by searching, and also came across himmunitas.org. How costly is it? Do you think it is better than seeing Dr Myhill? This illness is such a minefield of information, scattered with scam artists trying to take your money mixed in with those genuinely on to something! Very confusing.

    I had looked at Dr Myhill before, and had a look at her free information PDF which was fascinating. A lot of information to take in. I will brave her wiki style website and take another look! I remember reading about B12 injections and thinking "theres no way my GP would ever agree to that!"

    SOC, I was diagnosed with CFS initially when I was 12 by a psychiatrist and then seconded by a paediatrition. Then a few years ago I had to go through a few tests to get a referall to the local NHS ME Clinic where they took bloods, did a symptom check, felt lymph glands etc. Does this count?

    I have suffered from depression quite severely, but at the moment I am pretty good mentally but my CFS symptoms are the same as ever, if not worse.

    Many, many thanks again
    xxx
     
  7. Lae

    Lae

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    Thankyou Sian and hi! Sorry you posted whilst I was typing my reply to the others.

    Its very interesting to hear of your experiences, particularly about Niki Gratix. Thankyou for sharing, and also your recommendation for Dr Myhill. She sounds promising. Its difficult that theres no "one size fits all" solution, and I hope that in time there is one. I think we are all secretly holding out for a nice one pill quick fix to be invented!I'm sorry that you spent out the £600 on the 90day course without much good coming of it. The STOP method I have come across before in relation to depression, which makes some sense in that context but I don't see how on earth it could help CFS!!!!!

    My partner has suggested that we look into yoga and meditation together after reading this thread and I think thats a good idea, I'm very lucky to have his support!

    Do people tend to use CFS or ME on here? I always feel like I'm shouting ME ME ME ME ME when I type it hehe
     
  8. sianrecovery

    sianrecovery Senior Member

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    I use ME because to me it has a meaning and a criteria
     
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  9. Aquila

    Aquila

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    I did this. It’s basically NLP plus nutritional advice. The NLP is done well enough, it’s less cultish than the lightning process but still a lot more expensive than say the Gupta process but you do get somone to talk you through it. I know many people who have been seemingly cured by NLP but sometimes it’s been short term and sometimes they relapse but some are still healthy after being ill for years. It’s probably the thing that I know has helped the most although it can be damaging. I know people scoff on here a lot about NLP and many of its perpetrators are questionable and cultish at best but I know so many people who had very similar symptoms to me who are seemingly long term cured by it it seems worth a least a cursory glance just be very careful.

    The thing that really put me off OHC apart from the expense is that they are very into EFT and wrote a long piece in their booklet about how you should eat raw food as cooking kills it’s life energy. I find it hard to pay and listen to anybody’s advice who believes in meridian lines and plant's life energy as a different entity to nutrients, carbs proteins etc.

    They are also seemingly obsessed by the usual alternative health things like taking loads of supplements without necessarily checking what people are low in, Getting everyone to detox, diagnosing metals overload etc and they run out of ideas pretty quickly if it doesn't work.
     
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  10. anniekim

    anniekim Senior Member

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    Personally I feel if you have M.E and not burnout, depression post viral fatigue OHC will offer little. I've seen Dr Myhill in the past and though I know her diet advice, supps and some other things she offers, B12 injections, magneisum have helped some people, I didn't get any improvements from her suggestions and in fact one of her suggestions I felt triggered a nasty relapse. We are all of course different and that might not be the case for you.

    If I had some money to spend on private treatment, I would want testing for reactivating virus', testing for lyme and treatments that aim to help the dysfunctional immune system that seems to be at the core of M.E. Diet, pacing and meditation can all help, but this is something you can address a lot cheaper than the OHC. This is of course just my opinion....

    I also think it helps to bear in mind those few doctors in the world who have taken an interest in M.e over the years and treat patients say there is no cure for M.E, but some treatments may help improve functioning and improve quality of life. The problem is finding treatments that can help you to do this and I think if you don't pace and live within the limits the illness imposes any ground gained in treatments can be easily lost.
     
  11. ukxmrv

    ukxmrv Senior Member

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    I had some dealings with the OHC when they asked for people to fill in a questionaire on CFS and ME. I found that the questions were nothing to do with ME but appeared to be for people with fatigue, stress and burnout. Talked to them after I filled it out and was pretty appalled at their attitudes and what they think ME is.

    I became ill after an acute viral onset as part of an epidemic. The treatments they were offering were none that had helped me in the past. I've done the NLP and nutrition and for me personally it was a waste of time. The questionaire and the clinic person I spoke to were interested in the emotional side of the onset and not the viral side.

    From meeting other UK patients the impression I get is that the OHC doesn't help people with ME but that it may be useful to people who have emotional problems that will respond to their therapies. The OHC does throw in some current physical theories about ME but they are not the focus of their tx and could just get lost in the emotional side.

    I'd be worried about vulnerable and sick patients going there falling under their influence and being brainwashed into thinking that they had emotional problems and that fixing them could improve their health. When I was finding it hard to cope with this disease it was hard for me to find therapists who didn't make these ( untrue for me) claims. The one who mixed nutrition and emotional treatments were for me the worst at trying to manipulate me and offered the most harmful advice on how I should be treating this disease.

    It feels more like a religious cult than a medical clinic. Alex Howard has an uncle with a background in alternative religions (Iain McNay) and so it's been a bit of a family business to make money in these areas.

    I'd be straight to see KDM if I had the money and was well enough to travel.
     
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  12. justy

    justy Senior Member

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    Hi Lae, so sorry to hear about how young you were when you became ill. My daughter was first ill at 15, and is now 18 and still undiagnosed (she has an illness that looks like M.E but may not be) although she has vastly improved she did spend a year bedbound and missed out on school, friends etc - i know how hard it can be, having watched her go through it.

    You can find info on Kenny De Merlier on this site by searching him in the search box. If that doesnt bring up what you want you could start a seperate thread - there are quite a few of his patients on this site. Like most M.E specialists i have heard mixed reports - same for Dr Myhill. Dr Myhill has helped me - and may have helped more if i had had the money to see her regularly (she does do phone consults as well)
    If i had the money, right now, i would be on the Eurostar to Brussels to see KDM. From what i gather he does very extensive testing and has some treatments that are helping some to improve. My other option would be Dr Enlander - he does Skype consults from New York, and travles to London occasionally - but this would be a lot more com[plex as you would have to get the testing done somehow here - making it all more of a faff.

    Nutrition, and mediation have really helped me to cope (especially when i had severe anxiety) but they have not made me better - they have made me cope better and accept more. Resting and supplements have helped. a bit and slowly. My functioning has improved quite a bit from 2 years ago. BUT i have had a long partial remmission in the past and it may be the natural course for me to tend to improve over time. Hvae reached a plateau now though and slid back a bit.

    The B12 injections i had prescribed by Dr Myhill and i buy the b12, needles etc from her. My Gps surgery showed me how to self inject - they would never have prescribed them. I do know some buy the stuff over the net - but you do need someone to teach you how to do the injections (it is easy and not really painful, into the fat layer)
    Take care, Justy.x
     
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  13. sianrecovery

    sianrecovery Senior Member

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    I totally agree with what everyone has posted re docs and OHC. The reality is - no one has 'the answer' - partly because the 'the answer' will be very different for different people suffering from ME. I think if there is merit to the stop/NLP/retraining stuff its when someone has regained most of their physical health but finds it hard to change their thinking. I have never meet someone in that position though - I suspect when you start to feel better, you start to feel better. Anniekim and Justy and UKXMRV are all right I think - altho I dont share the desire to get on eurostar to see KdM - if I was going European, I would go to the clinic Athene found in Germany which had helped her get on top of her chronic infective issues. sorry Lae - the holy grail still eludes us. But that doesnt mean nobody can help, or that diet, lifestyle, focussed appropriate testing and response, environment dont have an impact - addressing those things has had a huge impact for me - its hasnt cured me, but it has helped me get more functional. Hope is important.
     
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  14. Lae

    Lae

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    Thanks so much for all the information, it is all incredibly helpful. I am sharing it with my family too. There is a lot here to digest, so please bare with me whilst I look up each thing mentioned! I will post again soon, no doubt with a bombardment of questions for you all :redface:
     
  15. justy

    justy Senior Member

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    Lae, you are very welcome. :D
     
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  16. taniaaust1

    taniaaust1

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    I personally think people should use the term for the illness which best fits their symptoms/symptom patterns. Some people who have CFS dont in fact have ME. If you fit ME stuff... it is much better to call your illness ME.

    If a person dont have ME but is calling their illness ME.. it is likely that others here will then give them wrong advice as they will be giving advice for ME and not for CFS .

    If you dont understand the differences.. if you meet the Canadian consensus criteria.. you are likely to have ME. There is also the international diagnostic criteria for ME which you could see if you meet as well to work out where you probably fit with things.

    The clinics like the one you are asking about are treating CFS patients and not ME patients. (only about one in every five or six CFS patients really have ME if the different rates of the illness according to definitions are something to go by). to confuse the matter.. what is called ME thou in England is not really ME but rather CFS.

    ME is an illness which is a neurological disease and in which there has been outbreaks worldwide of. CFS patients may just be depressed or wrongly diagnosed patients etc etc (things like FM or POTS and many other things can often be wrongly diagnosed as CFS as these patients can quite a few symptoms due to these disorders).
     
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  17. sianrecovery

    sianrecovery Senior Member

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    I understand its important to have some kind of rigour in our thinking around criteria of diagnosis - but given we are all at the mercy of whichever numpty diagnosed us for our 'formal' diagnosis, and that in the UK that comes from within a medical establishment driven by a pyschiatric model, that distinction may be very helpful in this particular discussion
     
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  18. anniekim

    anniekim Senior Member

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    Sian, were Athene's chronic infective issues all bacterial in nature, or were some viral too? I know Athene kindly shared on here the German clinic helped her with her lyme infection and some other bacterial infections, but i don't know whether she had re-activating viruses as well. Hope it's ok to ask
     
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  19. Lae

    Lae

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    So, having read all your posts for the thousandth time I visited my Mum today and showed her. We have a new dilemma, and thats figuring out if I have ME or CFS! In all honesty, because the doctors have always told me they are one and the same and that they prefer the term CFS, I hadn't given any thought to what I actually have. Argh, as if this stupid illness couldn't get any more awkward! ME has been such a big part of my life for so many years now (I'm now 25, 12 when I was diagnosed) I guess I've come to just accept what I've been told without really questioning it.

    Admittedly, when I first got ME (or CFS, or whatever else!) as a child it was a period of very high trauma. Yet at the same time when I looked at the canadian consensus thing for ME I meet the criteria. But my mother swings towards thinking it was triggered by high stress, which would be CFS. Or am I getting muddled?

    As in immediate step, ME or CFS I need to improve my diet, so I will do a good search through this forum and make some small changes as a start :) You are right, hope is vital!

    I clearly have a lot to learn though. Thankyou for sharing your knowledge and opinions with me so far once again.
    Your eager student :love:
    Lae x
     
  20. anniekim

    anniekim Senior Member

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    I would say it is the criteria that is most important, not the possible trigger, if you meet the Canadian criteria this suggests to me you have m.e. Please remember some people who are formally diagnosed with CFS have the illness M.E whilst others may have solely fatigue for various reasons. M.E and CFS can be the same illness, just not everyone with a diagnosis of CFs has m.e. As said, it's the criteria that is important.

    Also, I personally feel if you have not got the cardinal symptom of m.e, post exertional malaise/post exertional neuro immune exhaustion (all baseline symptoms - such as pain, noise, light, chemical sensitivities, interrupted sleep, dysregulated body temperature, sore throat and glands maybe etc..- made worse by exertion and that exertion can be very minor) then I would question you have M.E. I'd also check out the International criteria too. Hope this helps.
     

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