1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Nitric oxide and its possible implication in ME/CFS (Part 1 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. Part 1 of a 2-part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS. Part 1 focuses...
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Simon Wessley replies

Discussion in 'General ME/CFS News' started by maryb, Dec 12, 2012.

  1. Bob

    Bob

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    Notice the words: "can indeed be".

    The PACE Trial demonstrated that self-reported (subjective) symptoms can be moderately improved, and 11% to 15% of CFS patients reached the minimal threshold of a 'clinically useful' outcome, after treatment with CBT or GET.

    However, when it comes to objectively-measured physical disability, CBT had no therapeutic effect at all in the PACE Trial.

    The PACE Trial acknowledged that the self-reported primary outcomes are subject to bias, so, as self-reported symptoms can be moderately improved, but objectively-measured disability is not reduced by CBT, then this suggests that CBT does not 'reverse' illness, but it helps a small proportion of patients feel subjectively better about their symptoms.

    I've got no problem with that, if it is promoted transparently.

    CBT and GET "can help" a small proportion of secondary care patients deal with subjective feelings of illness, but do they not help improve disability, according to the PACE Trial results. The FINE Trial suggests that primary care patients are not helped by CBT or GET based therapies.

    The PACE Trial demonstrated that CBT and GET are 'moderately effective', not 'effective', for secondary care patients. And the FINE Trial demonstrated that therapies based on CBT and GET are not helpful, for primary care patients.

    Well, the PACE Trial was quite powerful evidence, so I'm not convinced that he changes his views according to the latest evidence, esp considering the objectively-measured outcomes in the PACE Trial, and the outcomes of the FINE Trial.
    Sean, justy, ukxmrv and 2 others like this.
  2. Firestormm

    Firestormm Senior Member

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    I share your rant. But CBT and GET and Activity Management and Symptom management of some symptoms with drugs - WERE NEVER SOLD AS CURES. My expectations and the way in which I tried to overcome this condition were/was if anything wholly unrealistic. It was the practitioners and doctors who 'brought me down to earth with a bang!'. I was the one who wanted them to cure me. I demanded it. It was they who had to work me down to more reasonable expectations. When you ask 'is it practical'? I would have to say - it is the only way. What isn't practical is trying/having to live beyond what is possible with this degree of disability. What isn't practical and is unreasonable is the continuing need to fight for help and support not only at times within healthcare, but within the benefits system and in the employment arena - is this unique for people with ME? No. I don't believe it is.
  3. Firestormm

    Firestormm Senior Member

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    Valentijn. Short answer is 'No' I don't believe I have. Long answer is: I have seen enough specialists along the way all of whom have been largely unable to 'fix' the problem. I asked you about treatment - you said some was available for this specific aspect of ME. If something is forthcoming - from the research - I would at least like to be able to see what effect a long period of undisturbed sleep has on my daily fatigue levels and on my level of disability. I don't think any study has ever looked very closely at this link before: the effect of sleep dysfunction on daily fatigue. Or on the aspects that night-time disturbances - vivid dreams, night sweats, paralysis, even 'fitting', and a general inability to maintain sleep for more than a couple of hours at a time - have on ME. I wish they would. I'd love to get some quality sleep. I think all things considered - for me - it is one of the most frustrating aspects of this condition.
  4. Valentijn

    Valentijn Activity Level: 3

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    And there's the problem. Unless there's a large study that the experts are acknowledging, many doctors and even a subset of patients are completely unwilling to consider trying something. As a result, patients are missing out on things that haven't been in large trials (and probably never will be).

    IF you have abnormal glutamate levels (based on symptoms, including epilepsy, you very well might), then a cheap and harmless supplement, N-acetylcysteine, might help a lot. Depending on what tests have been run, and what they show, and what people's specific symptoms are, different things might help.

    For me it was a combination of very high glutamate and pain keeping me awake. B12 takes care of the pain and NAC takes care of my mind being in high gear if I happened to wake up at night (usually due to the pain). But if patients aren't willing to listen to each others' experience, do some research to see if it makes sense, and try very harmless things, then they are probably going to be stuck with either 1) very nasty symptoms that can be avoided or 2) high doses of pain-killers and sedatives.

    Personally I've found it be very worthwhile to listen to the experiences of other patients, even if no studies are available to support (or discount) what they're saying.
    Marco likes this.
  5. Firestormm

    Firestormm Senior Member

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    Fair enough. So what effect has this dealing with your sleep dysfunction had on your other symptoms? I do find it very 'odd' that such a simple remedy has not been rolled out to more people. Indeed, I have been lead to believe that sleep dysfunction in ME and all the symptoms that this attracts - are largely untreatable at the present time. And, if I am being naive then so be it - but at no time have any of the experts I have seen over the past 15 years recommended 'B12' or 'NAC'. As they haven't, I haven't tried them.

    I do recall one German doctor in Jersey who 'had a theory' and used to patiently inject me with a 'combination of vitamins and minerals' directly into a vein in my arm. Unfortunately - for him - he left the island under a cloud (not related to his abilities as a doctor). At the time I thought 'well at least he's trying something' and felt reassured by that. But what he did had no effect whatsoever.

    But who knows? With this condition we are up and down and all over the place. Who's to say when a suitable time occurs for each and every remedy to have an effect? Maybe I was 'unlucky'.

    Funny though that all this effort that has been spent on Ampligen and Rituximab - when B12 could fix one of the most distressing aspects of this symptom cluster. Of course the debate about B12 (I don't know what NAC is I am afraid) has raged across the forums for donkey's years - but even the latest Primers do not recommend B12 - do they?
  6. lnester7

    lnester7 Seven

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    I got a sleep study done. This was crucial to determain I do not reach stage 4 Sleep. I had a separate issue (sleep apnea) The Dr did not look into the disrupted sleep pattern, I had to tell him CFS people do not reach Stage 4 so they change my Sleep meds to target that Issue, I hate sleeping pills but there was no natural way to address this issue. I tried it all. So I can sleep through the night now. It has made a difference on my functional scale and for me not too feel so miserable all the time.

    Note: I addressed the sleep apnea w CPAP after trying Dental appliance... The second sleep study said I was OK, apnea was Good, But I still Had Stage 4 issues. Which Again, I had to point out, all they care about was to treat the Apnea. Then went back to GP and he up the dose of Trazadone, I am on 300mg a night now. After a while I can tell by myself now when I had good stage 4 sleep Vs when I don't.
  7. Firestormm

    Firestormm Senior Member

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    Thanks.

    Sleep Apnea has been ruled out for me several times but I agree totally that it should be considered for each and every person who presents with an ME diagnosis. Sleeping pills - as in prescribed medication - I do not take. No doctor would prescribe them for me and I never asked I don't think - I wouldn't want to (personal choice).

    I try and manage my sleep as best I can - 'sleep hygiene' (lol I do like that term (not!)) - is as good as I and my specialists can make it. It wasn't when I began this journey - but it is now.

    Sleep dysfunction remains largely a 'mystery' surrounding ME and I don't recall anyone ever advancing a hypothesis beyond (what may well be perfectly valid) that of the original theories pertaining to some sort of hyped-immune response including abnormal body temperature regulation.

    But these damned vivid dreams? Nope. Never heard from anyone about those - other than what they might comprise - but not why they occur so consistently across a wide swathe of the ME patient population (allegedly).

    It could be yet another - something else I suppose - but again I would be very surprised if this is the case given the amount of intervention I have had over the years (including from psychologists). Is it all linked to being disabled - unable to do as much as I want - unable to live the life I want - to guilt? In part perhaps but again we have largely worked on this and the vivid dreams remain...
  8. Valentijn

    Valentijn Activity Level: 3

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    B12 is very well known by ME patients and experts. I have no idea why no one has tried it with you. Or why they haven't bothered to run some basic tests to at least rule out obvious causes of some of your symptoms. NAC is something I came across somewhat accidentally, but has been very helpful for some of that have tried it - and not helpful for some others. This is where testing is nice, because it indicates what a sensible treatment is, even in the absence of large double-blinded studies involving identical symptoms.

    B12 and supplements are patches to deal with symptoms so we don't have to live in quite as much misery as we would otherwise. They don't stop crashes, or OI, or food intolerances, or a dozen other things, but that doesn't make them worthless. Rituximab and similar lines of research are aimed at looking for a cure, which is a completely different kettle of fish.

    But I think it's incorrect when someone tries what an NHS doctor and the standard referrals suggest, doesn't improve sufficiently, and asserts that the symptoms are therefore untreatable. It makes no sense to dismiss all alternative avenues out of hand when the standard ones have failed, and then to defend the standard avenues as being the only useful ones.
    justy and PhoenixDown like this.
  9. lnester7

    lnester7 Seven

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    This is how it was explained to me. There is a stage where is your dream one (I forgot if it stage 2 or 3), If you are staying in that stage most of the time, then you are in a dreaming A LOT, but u never reach the repair stage 4. Look back at your sleep Study and you will see the percentage of time you spend in a sleep stage. If you do not repair you are in trouble. There are some nasty sleep meds, others do not form habit and are less toxic. You have to choose what is more damaging from your perspective the lack of repairing sleep or taking the meds.Sleep hygiene is good for imsomnia will not help you with the stages issues. I also have heard is a cytokine reaction, an autonomic issue....

    If anybody knows of an specific natural Stage 4 inducer I am all for it, let me know.
  10. Firestormm

    Firestormm Senior Member

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    Well that just shows how completely you have misinterpreted where I am coming from then doesn't it? My parents wear copper jewellery (for want of a better word) because they feel it helps with their arthritis. Does that means everyone should wear copper jewellery or that copper jewellery is proven to be of benefit? No.

    If I do a google search for CFS and B12 are you saying I won't find anything - no science? And what tests are you referring to? If I had a B12 deficiency I can assure you I would have been told I had. I have been tested and tested and tested. Stop inferring that I am surmising one thing when I am not.

    You have your B12 and I am delighted for you but here you are still involved on forums. You are not 'fixed'. Did B12 take you from 'severe' to 'moderate' for example? In what demonstrable way has B12 (or anything else) helped? This and other threads are about primarily CBT and CFS/ME. I am not going to be talking about anything else - am I?

    And if in my experience of 15 years I have determined that I am better off without investing my time and hope in 'alternative' remedies - then that's my decision. Again, I am delighted for you. We all are different. We all have found things that help. Next you'll be volunteering that I try GcMaff because some patients feel it works for them.

    I have spent enough money and enough hope in all these remedial suggestions and for me I have determined enough was enough. I no longer have the funds to hire private quacks or spend on alternative hopes. If what the NHS has to offer only serves to better help me manage and even if it only slightly improves my quality of life - well so be it.

    Good luck to you.
  11. barbc56

    barbc56 Senior Member

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    Several comments here, including n=1, so take them in that context.

    My B12 was low and was given shots until my level was normal. I didn't feel any different but at least my B12 levels are now normal, so yes I needed the shots. Unless you have a deficiency, vitamins won't help you.

    I have no idea about glutamate levels but as far as the neurotransmitter test which is used by alternative practitioners, is that the level in your blood does not coincide with the level of neurotransmitters in your brain. This means you may be taking a supplement, whatever, that isn't needed. It's not so much about the level of neurotransmitters but also how efficiently the neurotransmitters are working in your brain. You could have a brain biopsy but I wouldn't recommend it.

    Sleep is so important with our condition and I think it's important that we all get a sleep studies. I've think I've had so many sleep studies, I count each one to get to sleep.:rofl: Sorry, that just slipped out. I have four confirmed sleep diagnosis and the last thing that was discovered was sleep apnea which I would have bet money I didn't have. Imagine waking up 51 times per hour without realizing it. No wonder I was beyond exhausted. Yes, it helped but I am still sick the same as when my thyroid meds. were adjusted and my ferritin level has been normal since a nine hour infusion of iron as well as my sodium level. I did see an improvement with the later. But I am still very sick. As my neurologist said, I have to take into account that I still have me/cfs/fm . So even those those therapies helped a bit and were medically needed, they certainly weren't a cure nor did my doctors expect it to be.

    The one thing I don't understand that Wessley et. al. is say is that CBT/GET are the only effective treatments. What about medications? Some have had studies to show that they work for some people.. But then maybe it's because he is a psychiatrist? It's like the story of the blind men describing an elephant. Fortunately, my health care is a team approach where all my doctors have computer access to my records and consult with other specialist I just realized there is one exception and that is my psychiatric records other than medications and the reason I was given them such as depression/ pain. I signed a waiver, gladly signed, that my other doctor's could have access to my psychiatric records which ironically just say what meds. I am on and why. I will be the first to admit that my health care is stellar. Finally, and unfortunately that had to do with which insurance carrier I had at the time.

    I also saw a nurse practitioner/mental health therapist who was wonderful. She never once said this was in my mind nor my fault I wasn't getting better. She was able to hook me up with services, helped me implement some everyday strategies that had helped others. Most importantly these were not rote strategies but tailored made to my needs and personality.

    I had Physical Therapy by a therapist who specialized in our condition but especially FM. She told me any activity would help within the boundaries of what I can reasonably within my limitations. and kept that in mind if I started getting flares beyond the expect, whether we needed to backtrack or hit my tolerance for exercise. She told me a story of someone who was bed bound and would practice writing letters in the air with her hands while in bed just to keep her muscles from becoming atrophied. She was still bed bound but it prevented further problems. Even people who are in a coma get some type of preventive PT.

    I know I have repeated some of the above in other threads, don't remember which as these threads are starting to sound alike to my feeble brain.

    I need a nap.:)

    Barb C.:>)
    Firestormm likes this.
  12. alex3619

    alex3619 Senior Member

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    Anecdotal evidence is a clue, but it cannot be generalized to a group. So that is an important context to note.

    B12? I am not convinced that old B12 tests are necessarily relevant. What percentage was metabolically active B12, and were both methyl and adenosyl B12 at required levels? "B12 is normal" is a nonsense claim according to current science. Which B12? What about biochemical pathways that utilize these?

    Glutamate levels are not much more than a clue unless in context with other factors. From known biochemistry the taking of magnesium is one of the simplest solutions, though its only a modifier.

    Sleep is induced by PGD2. It is a series two prostaglandin which is dependent on a bunch of enzymes. Delta 6 and delta 5 desaturase (two key enzymes) activity directly correlate with glutathione levels. We often have low glutathione, in part because its depleted in oxidative stress disorders, in part because many of us have issues with synthesizing it (which is the point of the methylation threads). Taking NAC leads to more glutathione, and so more d5d and d6d activity. This means more arachidonic acid is available on demand. This means the potential for sleep is higher. However it also means more arachidonic acid is available for synthesis of pro-inflammatory eicosanoids.

    So if you make too much PGD2, goes my current model, then you get hypersomnia and some brain fog. African sleeping sickness has a parasite that makes more of it. It can also induce airway hyper-reactivity, and is over used in allergies as mast cells release it. This might, though I am not sure, also explain sleep paralysis.

    If you run out of substrate for PGD2 you get insomnia. The brain needs to make more. NAC and even evening primrose oil might help, but might also trigger inflammatory processes.

    You can switch between the two symptom sets.This kind of switching has been observed and tracked in many patients since the late 1980s. Some of it was published but not all. I was a guinea pig in some of this.

    It is incorrect to say that vitamins are only of use if you have a deficiency. That is a public health message, and biochemically insupportable. Le Chateliers principle, a 19th century principle that is a bedrock of chemistry, is in direct conflict. It is fair to say that vitamins do not correct a vitamin deficiency if you have no deficiency. Well, duuhh. That is not all they do though, and it is scientifically and medically insupportable to claim this. Key chemicals drive the rate of chemical synthesis. This includes substrates, products, enzymes and cofactors. Vitamins are typically cofactors. So they increase chemical synthesis. However this is not selective. They increase synthesis on all pathways if you take more. Hence they lead to side effects. This is a use of natural substances, including vitamins, as drugs. Its a drug like response.

    Now there are complications due to biochemical feedback loops. That is far too complex to discuss here though, and my brain might need to be working better than it is at the moment to discuss this. I have a fogwall moving in.

    The issue of brain levels of chemicals versus blood levels is very important, and in fact applies to all tissues. Blood has its own filtering and homeostatic mechanisms, as does urine, but tissue levels may not reflect blood levels. A case in point is that about half of all CFS patients are potassium deficient, yet this almost never shows up in blood tests. Its a tissue level deficiency. Blood levels are homeostatically maintained or you would die.

    One of the problems is that doctors are not chemists, organic chemists or biochemists. The appropriate discipline for medicine is probably physiology. These systems can be measured, interpreted and modified. This is expensive, complex and beyond the capacity of most doctors and pathology labs. The subdiscipline of Functional Medicine (which is about physiology and biochemistry not psychology or psychiatry) is a new area that is looking at these issues. They have a long way to go. This is all complex stuff and difficult to research. This is complicated by issues that public health messages are generalized and dumbed down. They try to keep it simple even if that means its not accurate.

    I have not even discussed issues with things like folic acid. The public health message is folic acid is good, eat more, and legally many countries fortify bread etc with it. Yet research is now showing it is probably a toxin, and few (though not on these forums) are aware its not even a vitamin, its a drug equivalent. Folic acid was recently associated with dementia, cancer and natural killer cell dysfunction. This is still being researched, and is considered contraversial.

    With respect to CBT and GET, I don't think most of us object to their potential use as adjunctive therapies for patients who want to try them. I have done both, though the CBT I had was about coping strategies and didn't teach me anything new. The GET made me worse ... every time I tried it with one exception, which led to a limited temporary improvement and was probably nothing to do with GET but with other things I was trying. I am a stubborn cuss.

    I am aware, anecdotally, of several cases where biochemical research on ME was denied publication in major journals because one of the reviewers wrote something like "CFS is psychiatric, this paper has no value." That kind of bias means that biological papers on ME get published in lower prestige journals. It does have an impact.

    Bye, Alex
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  13. ukxmrv

    ukxmrv Senior Member

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    Firestormm,

    Something to consider maybe is that you underwent CBT quite recently (i.e. in the last few years) for ME or CFS (would that be correct)?

    Also you are taking your own experience and although CBT and GET were not sold to you as cures they certainly were to other patients and in some clinics there is ancedontal evidence they still are.

    If SW and his colleagues made claims to patients in earlier years that were wrong, caused problems for patients then this needs to be exposed and dealt with. It would need a proper investigation of all the earlier evidence and what happened as a result of it.

    We can't keep have them changing the goal posts and pretending that the earlier harm didn't occur.
    Wildcat and Valentijn like this.
  14. Kati

    Kati Patient in training

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    What Wessely has been very successful at is creating a monopoly into what the treatments of ME/CFS should be. He gives 2 and only 2 options. This has been shared all around the world and is still being shared as the only 2 therapies.

    He has also been very successful in blocking most attempts at researching bio-medical aspects of the disease, and perhaps indirectly trying to oust Sarah Myhill and Jonathan Kerr ou of the field.

    This empire has been cleverly crafted, ensuring he has the bigger hand at deciding what scientific paper gets published, or not, which news gets shared like propaganda, and how his (sick)science gets interpreted.

    I command the efforts of all trying to unravel Wessely's ruses, like Countess of Mar, Prof Hooper, and Sonia Poulton amongst other.
    ukxmrv likes this.
  15. barbc56

    barbc56 Senior Member

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    I said this. N=1 is the same as anecdotal evidence.

    If you want to discuss functional medicine, I would suggest starting a new thread. I think you can guess what my take is on the subject. I probably won't reply as I don't post on the alternative medicine site. Here is a science based take on this subject

    http://www.sciencebasedmedicine.org/index.php/functional-medicine-new-kid-on-the-block/

    Now back to our regularly scheduled topic.:lol:

    Barb C.:>)
  16. alex3619

    alex3619 Senior Member

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    Hi barbc56, thanks for the link about functional medicine. Its amazing how many things it got wrong in only one page. I might blog about it at some point. First it miscategorizes statements out of context, then miconstrues their meaning, then posts wrong counter-arguments about those miconstrued statements, then completely ignores cutting edge modern biology. Its like something written with 60s science. Amazing. Truly amazing. Its an opinion piece and not very well constructed. Functional medicine is a new kid on the block. Its not very well structured yet and has decades of development to go, at least. That doesn't make it wrong.

    The errors that typical doctors make every day and can be shown with science (like issues with reference ranges for vitamins) can be resolved by taking a functional medicine approach. However, it does have this problem. Its an underdeveloped concept that needs serious research to make it widely applicable. Its like BPS in that sense. BPS embraced the systems concepts, then abandoned them completely to go with buzzwords and stale redressed doctrine. Functional medicine might yet go the same way ... or not. Its a work in progress, not a finished result.

    So what is the core of functional medicine? In my view its about abandoning standard statistical reference ranges and limited dogmatic interpretations, and looking at detailed impact of related biochemistry and how that modifies the understanding. For example, a piece missed out in the article, is that functional medicine is looking at things like pharmcogenomics:

    http://en.wikipedia.org/wiki/Pharmacogenomics

    How a person responds to a drug is an individual genetic, nutrition and health related response. You don't get that from reading from a table. You can also pick up likely side effects. Go figure. Drug companies do not promote this stuff. What, tell doctors that many drugs have up to five percent of patients respond in highly atypical ways? Due to individual chemistry? That this can render a drug useless (hey, it didn't work) or render it very dangerous (that minimum dose hit me like double handful overdose).

    As for N=1, I wasn't disagreeing with you, I was expanding on the point. Anecdotal evidence has value, its just not reliable when generalized. Indeed, generalization is often a fallacy. You were putting context to your statements, with which I approve.

    I have one idea why many docs possibly distrust functional medicine. It takes years of extra training just to begin to do this. Most docs are not qualified, though they could become so if they wanted to.'

    As I see it functional medicine is not value for money for dealing with stock standard problems. Its however an option for dealing with unusual and not understood problems. Thats not everyone, or every problem.

    What I did pick up on in the comments in the article is that functional medicine might be subject to hype. Thats not surprising. So is nearly all medicine. One of the biggest and most widely cited fallacies in medicine is "its all in your head".

    What is important to note with functional medicine is that it is still acknowledged as experimental, its not a mature discipline. CBT/GET based on the dysfunctional belief model should be regarded as even more experimental. None of the foundational ideas are validated. Functional medicine is at least based on valid biochemistry, though that doesn't mean a doc will interpret it correctly.

    Bye, Alex
  17. Valentijn

    Valentijn Activity Level: 3

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    Demonstratable? I feel less pain now. Aching legs don't wake me up. As I said very clearly, it treats certain symptoms. Certainly not all of them. It doesn't affect functionality much (which is what "severe" and "moderate" designations refer to), but it make my life far more pleasant.

    I think you misunderstand what alternative remedies are. Vitamins and amino acids that are normally found in your body are far from alternative, unless your definition of alternative is everything that isn't an artificial substance created in a factory by a pharmaceutical company.

    I'm glad you acknowledge that we are all different and have found things that help. So why keep tearing down everything -except- what the NHS is offering? Lately I've been seeing a lot along the lines of "I'm not saying this to tear down X, BUT X probably sucks and won't help".

    Why does someone bother asking if there's other treatments, if they are not willing to try anything else whatsoever? Why do they state that "nothing else will help my symptoms" when what they really mean is "I won't try anything else"? Even when there are studies backing something up, some people still just tear them down unless it's coming from their CFS "expert" doctor that has never heard of B12 helping ME patients.

    I may not be "fixed", but I'm in far better shape than I would be if I'd stubbornly stuck to what the mainstream doctors did for me. And I'd probably be in better shape psychologically if I'd avoided some of their recommendations :p

    PS - If drugs are more acceptable than supplements, Pregabalin (Lyrica) is used for epilepsy, neuropathic pain, and anxiety. It's even approved for officially treating pain in fibromyalgia. It decreases the rate of glutamate being released, which also might help with waking up in the middle of the night then being unable to fall back asleep.
  18. Firestormm

    Firestormm Senior Member

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    Incorrect. I have not had CBT for ME. I had 13 sessions with a counsellor who used CBT following my last crash and a needed return to my parents home for care and support. As I have said, I want to try CBT and GET and Activity Management for ME - from ME specialists - but GET has never been considered appropriate for me. I do have an appointment with the ME physician next month to consider a review to the consultant clinical psychologist attached to the ME Service and/or Occupational Therapist given that I hope to try again for some greater independence i.e. a move from my parent's home to a home of my own - again.

    All of this has been an attempt to try and better understand what has been written and what has been said. My expressed opinions about CBT and GET for ME have been taken from what has been written and said, and from engagement with the ME Service we have in Cornwall and it's practitioners and patients. We have had discussions, we have engaged with a view to keeping a provision funded. But I have not had specific GET for ME or CBT for ME myself - no.

    If you ask me there will be little difference between the counselling I had three years ago, which did include my ME obviously; but I'd like to see for myself and I do know from where my local practitioners are coming from. Theirs is not an approach that says 'psychosocial' factors are causing ME for example and neither is Wessely for what that's worth.
  19. Firestormm

    Firestormm Senior Member

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    Val, I am taking Epilepsy medication. I am on several - a variety - of medications. My pain levels and 'restless legs', my nausea, and other symptoms that were out of control and causing much distress - are now more manageable. All prescribed by NHS practitioners. I take Sodium Valproate for the epilepsy specifically.

    FWIW and to repeat myself yet again - the missing ingredient from NICE is the pharmaceutical approaches to management of symptoms that can help and perhaps should be considered. There may be reasons they are not included, but I happen to think they should be because I happen to think that GPs are not as aware of what might help as they should. NICE leaves 'clinical' decisions like symptom management to the clinicians. I think they could be more specific.

    Again, I am pleased you have found B12 helps. There has been a lot of debate about B12. I have been around a long time. I don't claim to know everything of course but B12 has been debating for yonks. In all that time if a charity for example that funded research really thought that it's members and patients were clearly indicating this was a treatment worth researching they would surely have done so by now. Maybe they have and I have forgotten - but I don't think so. There have been studies I seem to recall but they were inconclusive - perhaps on another thread you can indicate these studies?

    I happen to believe that CBT is an approach - a method - that is applied similarly across all conditions and in general counselling practice. But the proof is in the pudding, as they say. I am not discouraged or disheartened or scared of engaging with any treatment that is recommended for me. 'Suck it and see' as I have always believed.

    Again, all of this that originated out of the 'threats', all of this from the Mar Letters, all of this discussion about CBT and ME of late, and my engagement thereof has been an attempt to try and understand where others were coming from. We have Ampligen tomorrow and that's my only engagement for the remainder of this year. I think we have done this particular topic to death now. Maybe Wessely will reply - again - maybe he won't. I think views against him are so entrenched that it won't make any difference what he says to those who take the view he is a 'bad bad boy'.

    If people have tried CBT and GET for ME having been referred to practitioners and have found it wanting, I do not hold this against them. Maybe if more people stated upfront that they had tried it and were not impressed - in future we'd be more appreciative of one another's views. This whole debate was generalised until it became personal - as usual. We were up to a point talking in the abstract - talking about one man's views of our condition and his understanding of both ME and how CBT might be used to help people with the condition.

    Have a good Xmas :)
  20. Valentijn

    Valentijn Activity Level: 3

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    Wessely's latest public response is indeed ambiguous (suprise!), but he has clearly said many times that ME is perpetuated by our beliefs about ME. He has also described ME as being psychosomatic in our experience of physical symptoms, due to our bias against mental illness.

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