Latest on CFS from UK's top specialist

Discussion in 'Fibromyalgia Main Forum' started by marcus1243, Feb 9, 2003.

  1. marcus1243

    marcus1243 New Member

    Okay, this guy costs 600 bucks an hour to see and the waiting list is approx 5 months, but he's at the leading edge of research into CFS. He's been on prime time TV and was physician to Lady Di. So he's got some serious cred.

    Now because I fluked an appointment with him, I figured I'd share his advice and treatment/therapy advice with you guys. I know everybody is different, but this is essentially a broad-based therapy anyway.

    In a nutshell, this is what he said:

    Fibromyalgia and CFS are branches of the same disorder, involving an over-stimulated immune system and an acquired dysregulation of brain function. The results are fatigue, muscle pain, MUSCLE WEAKNESS, paresthesiae, swollen glands, sore throat etc. etc. Any other conditions such as autoimmune, mycoplasma, candidiasis, infection which may be present are largely opportunistic and concomitant conditions, and while they make worsen the FMS, CFS are not the cause.

    Treatment:

    SUGAR FREE/YEAST FREE DIET

    AMITRYPTILINE beginning 10mg, raising to 50mg over weeks

    STRICTLY REGULATED SLEEPING HOURS, INCLUDING DAYTIME REST PERIODS

    ELIMINATION OF ALL OUTSIDE STRESSORS, INCLUDING WORK

    ENADA NADH 15mg EVERY DAY 30MINS BEFORE EATING

    Now I know none of this is earthshaking stuff, but they've been having great sucess with Enada, and it seems they're placing a great deal of emphasis on re-establishing proper immune system function, which is believed to be at the core of the disorder/s.

    Personally, I'm having some sucess with a regime including Aloe Vera 100% stabilized gel, Co-Q10 and an anti-candida diet. So there is some crossover there.

    Now they ARE having results with this therapy -- so it DOES work - maybe not for everybody, but it's gotta be worth a shot, right? Anyways. I just thought I'd share -- anybody got any further questions, bring 'em on! (Don't see why we should all pay $600!)

    Cheers,
    --Marcus

    PS. Jellybelly, while they're not classifying CFS and Fibro as autoimmune in the strictest sense (because they lack the pathological markers), both disorders are thought to cause the immune system's killer T-cells to secrete cytokines into the muscles, causing pain and weakness. So there *is* an autoimmune component here, consequent to a dysregulated immune system function.
    [This Message was Edited on 02/10/2003]
  2. marcus1243

    marcus1243 New Member

    You go to bed at an allotted time, whether you can sleep or not. You rise in the morning rather than sleeping in, and punctuate the day with rest periods/naps. You go to bed at the same time every night. Eventually, your brain will learn to shut the body down at that time, and begin to repair the body. It will take some time for this to happen.
    If you can't sleep at that time, the amitriptyline (elavil) 2 hours before bed will help.

    The essence of this therapy is to 'retrain' the brain and re-establish a properly functioning immune system and endocrine output. It's only part of the treatment, but an essential one.

    Not easy I know, but it's been found to work!

    --marcus
  3. sb439

    sb439 New Member

    ...
    does this doctor suggest that:
    HHV6 infections are not to be tested for, let alone treated? many of us could not even get out of bed without that.
    That absence of growth hormone is not to be treated?
    That intestinal problems are not to be treated?
    (sugar and yeast free diet sound a bit simplistic, I've been on that for years, and my CFIDS got much worse none-theless)
    What about adrenal insufficiency? Does he think that will just rearrange itself? etc. etc.
    The whole thing just sounds to me too much like a posh version of what the NHS (free medical treatment in the UK) suggests:
    keep'm quiet with amytryptilin (the cheapest antidepressant in the UK)
    Ignore all the physical symptoms, and do some behavioural therapy.
    I'd want to see their study of success before I believe any of that.
    Susanne
  4. marcus1243

    marcus1243 New Member

    No, before commencing therapy, he wants a complete blood panel, endocrine profile and screen for candida, HHV-6, mycoplasma, toxoplasma etc. This is a protocol for those (and there are many) who are negative for every test under the sun. (I'm not sure what you mean by 'intestinal problems though.) Basically, the folks who go to see this guy are afflicted by terrible symptoms despite a negative pathology (which is in fact the defining criterion for a dx of CFS) and were any symptoms to show up in screening, then they would be treated at first base. I perhaps should have mentioned that in an earlier post. Clearly, if you have an ongoing and chronic viral infection, you're not going to rehabilitate the immune system.

    The doctor in question is a Consultant Professor of Neurology, Clinical Director of the Fatigue Service, Advisor to the National ME Centre and Advisor to the National Tremor Foundation. CFS is his speciality and he lectures worldwide on it. I don't think he's a fob-off merchant, and I do believe that he has enough positive results in the bag to offer this therapy.

    And yes, amitriptyline is the cheapest antidepressant. It's also the safest, most widely-tolerated and yields the best results in securing deep sleep for patients.

    But I understand your scepticism. My gf is about to start the therapy, (which involves consultations with a fatigue team and a nutritionist) so I guess we'll see..

    I'll keep you posted.

    --marcus

    PS. He also expressed his distaste for those doctors who still refuse to recognize CFS as a definable clinical entity. And I'm telling you, just finding a doctor that *believes* in CFS/ME is a boon over here!!
    [This Message was Edited on 02/10/2003]
    [This Message was Edited on 02/10/2003]
  5. Mikie

    Mikie Moderator

    I also think this sounds a little simplistic. There are a lot of issues not addressed.

    I don't think anyone believes that infections such as mycoplasma actually cause the illnesses, but they certainly can trigger the illness or become chronic infections of opportunity in people who are already sick.

    What about quality sleep? All Elavil does is make a person sleepy. It does nothing to enhance quality of sleep. What about the mini-seizure state which causes many not to be able to get quality sleep? What about the sensory overload, anxiety, tinnitus, and RLS caused by this seizure state?

    If our pain is caused by the release of cytokines, why does the Guai, which removes phosphate debris from soft tissues, including muscle tissue, stop the pain?

    I think most experts and researchers see our illnesses as quite complex, requiring a much more comprehensive approach. I believe any success they are having with the described approach is probably with patients who do not present with severe symptoms and who may have caught the illnesses in the early stages.

    Again, I'm not trying to "shoot the messenger" here and I appreciate your sharing this with us.

    Love, Mikie
  6. sb439

    sb439 New Member

    ... and please don't take any of this personally, I'm glad for any information you give us and have reading enjoyed your posts for a long time.

    but think about who introduced the definition of CFS: Dr Simon Wessley from King College London, the main force behind the belief that CFS is 'all in the head'. (And he's also a 'world expert' on CFS and lectures worldwide, however someone who has done immeasurable harm to people with CFS in the UK.)
    That CFS is defined as if it were 'a disease' is already simplistic and flawed, as it makes a number of assumptions, e.g. that all people which share the criteria given for CFS suffer from the same thing.
    Then: the phrase 'no pathology' used to refer to: nothing comes up on the ordinary tests done by the NHS. It is only now that in the US etc. more and finer tests are done, that they add some of these. As a matter of fact, this constantly changes the group of people who have what is assumed to be this 'condition' CFS.
    As a matter of fact, none of the hundred or so people I now with CFS would fit the bill of 'no pathology' if all available tests are used, although they are all recognized (here) as having CFIDS. And it is just not possible to treat all the pathologies first, and once you've done this, and the person is still ill, you say: they have CFS and treat them with some protokoll. This is e.g. because people are too ill and/or sensitive to take the medications needed to get rid of the many pathologies in the first place. And their sensitivity is precisely a manifestation of their having CFIDS.
    Another example: A former colleague of mine and I both fit the criteria for CFS (in the way it was used in the UK in 2001). However, although we have all the symptoms, as 'generally described', if we go into details, we have hardly anything in common: there is no medication we both react to positively, all our individual symptoms differ immensly, etc. etc. - still no doctor here doubts that we both fall in the category CFIDS. Our treatment plans hardly overlap.
    So I can't believe that there is just one treatment that fits all.
    (Oh, and then there's Prof. Findlay, sometimes taken to be the leading ME doctor in the UK: read his publications and treatment suggestions, again, you'll find he makes many very simplistic over-generalizing assumptioms, too. I don't doubt he's sincere and well-meaning, but that's not enough.)
    Well, enough rambling.
    Remember, none of this is meant personally - my having been first mis-diagnosed for years, then 'mis-treated' for CFS in the UK, and my having got as ill as I am *as a result of that* has made me so sceptical.
    All the best,
    Susanne
  7. marcus1243

    marcus1243 New Member

    And I've done as much research into this as anybody, and I found it simplistic too. But at the same time, we can read ourselves stupid about what should or shouldn't work. The fact is, we don't have the answers to most of these questions: we don't *know* the actions of many medications that we take, and we don't truly understand the nature of the dysfunction that we are experiencing. That includes Guai, Elavil or any other drugs/medications. (There's no reason for example that my numbness and tingling should have completely resolved with Aloe Vera gel, but it has. Why? Because it's an anti-inflammatory, because it's a potent detoxifier? We don't know!)

    What we especially lack on this board are a group of patients on clinical trial, whom we can apply therapy to and monitor. That is precisely what this neuro has, and he is able to say *definitively* that this regime has had great results, with substantial remissions achieved in very sick, bedridden patients. It is not a question of theory, but practice. A clear etiology remains unclear, but the overall picture is of a regime which *can* help. Which makes it worth sharing :)

    Now everybody is an individual, and my girlfriend (who is *severely* ill and housebound with this illness) happens NOT to have a concomitant disorder which might be exacerbating her CFS. Therefore the treatment might be more applicable to her than to some on this board. But the common ground is that tackling this needs a multi-faceted and very disciplined approach.

    In any event, the posting was more an intent to illuminate what is current thinking rather than to prescribe treatment to one and all. Perhaps the messenger got the message tangled up...! ;)

    As I say, I'll keep y'all posted.

    --marcus

    PS. My local rheumatology clinic are having fantastic successes in CFS with Aloe Vera. They are completely bewildered as to why. But the evidence is right before their eyes.
  8. nell-UK

    nell-UK New Member

    Hi Marcus...

    I am interested in knowing the name of this chap (Are we not allowed to give names out here anymore? It's been a while since I was here).

    I'm also in agreement with Susanne on this, it all sounds quite simplistic, although you say he does test for mycoplasmas etc...I have a very good CFS specialist (his name is in my profile) and would really like to know who this is you are talking about, if you cannot name him here, would you be so kind as to e-mail me his name please at nell_UK2002@yahoo.com.

    Many thanks,

    Nell.
    [This Message was Edited on 02/10/2003]
  9. marcus1243

    marcus1243 New Member

    Your arguments experience and wisdom are more than welcome. And the day we stop questioning our physicians is the day we give in.

    Best wishes
    --marcus

    PS. Hey, look on the bright side -- I might have saved somebody $600!!
  10. marcus1243

    marcus1243 New Member

    I just didn't want to post his email address in case he was barraged with emails as a result of me saying things on his behalf (some of which I'm sure he'd want to elaborate on).

    --marcus
  11. nell-UK

    nell-UK New Member

    Cheers Marcus...yahoo e-mail is down at the moment but I'll get it when I can, I'm very interested to know who this is, thanks again.

    Love Nell.
  12. marcus1243

    marcus1243 New Member

    The details: Professor Leslie J Findley TD MD OLJ FRCP FACP

    And he says:

    "As a neurologist my biased viewpoint is that chronic fatigue syndrome represents a profound disturbance of functioning of the central nervous system and its connections through the neuroendocrine and neuroimmune systems."

    ----------------------------------
    'Professor Findley is currently a Consultant Neurologist at the Essex Neurosciences Unit based in Oldchurch Hospital, Romford, Essex. He is a Professor of Health Sciences (Neurology) in the faculty of Health Science at South Bank University. He is also adjunct Professor of Neurology at the University of Kansas Medical School, Kansas, USA. He received his undergraduate and postgraduate training in general medicine at the University of Sheffield. The postgraduate neurological training was done at the National Hospital of Neurology & Neurosurgery and St Marys Hospital, London.

    His main research interests are Movement Disorders, in particular tremor and Fatigue Syndromes. He is Medical Advisor to the National Tremor Foundation(UK). He is European President of the International Tremor Foundation (Kansas, USA). He is Director of Fatigue Services for Havering Hospitals Trust (NHS). He is Honorary Clinical Director for the National Centre for ME and Centre for Fatigue Syndromes a charity set up to compliment the NHS services. He is Honorary President of the Melvin Ramsay Society, a Society for the scientific study of Fatigue syndromes. '
    -----------------------------------------

    He's a regular contributor to the Chronic Fatigue Journal too. You can do a search to see what he's written.

    Make your own minds up, guys!

    --Marcus


  13. nell-UK

    nell-UK New Member

    Thanks for your e-mail, I have replied.

    I hadn't read that your girlfriend is seeing him so please ignore my opinion of Prof. Findley, I have heard of some people getting much better with his treatment plan. Unfortunately it didn't work for me (I needed more of an Immune input) but it does seem to work for many people, so I wish your girlfirend every success with it...good luck to you both,

    Love Nell.

    PS Is it not possible to see him on the NHS anymore? [This Message was Edited on 02/10/2003]
  14. sb439

    sb439 New Member

    ... so it's Findlay. Yes, I'm sure he is a million times better than Wessley.
    When I was referred to him in 2001 (after I refused to see the Oxford specialist for ME, who is a psychiatrist ...), I went on the web, did searches on his publications, and phoned his practice, etc.
    What put me off him is:
    (i) he didn't suggest people take any supplements (and I had just got myself up from being unable to walk for more than two minutes, and talk in coherent sentences, and being not 24 hours in bad pain, to being able to talk and walk normally for 15 minutes or so and in bearable pain, *just* by adding all the Teitlebaum suggested basic supplements to my diet)
    (ii) he says in a talk that he thinks you can only recover from ME if you accept a GURU figure (his word) whom you trust to get back up (really!!!)
    (iii) he boasted with a student of him doing a doctoral thesis on trying to find out exactly how many minutes a patient should walk and read every day and how to increase, etc., to get better, depending on patient (which seemed to me absurd, my view being that every person has to find out for themselves what the exact right thing is, given idiosyncratic differences.)and - at least in 1997 - believed that cognitive behavioural therapy was the key to it all.
    But, yes, of those doctors working for the NHS, I agree, he may well be the best, and more importantly, from what you say, he has widened the range of things he tests for considerably over the last few years, which is good indeed.
    (Still - in the UK I prefer people like Dr Hyams who have more international training. Dr Hyams worked with Findlay for some years, but also worked and did research with Cheney and Teitlebaum and others, so has a broader and more international range of approaches and is more open to new treatments, and believes that every CFIDS person needs to be treated individually in accordance with their specific symptoms and history of illness. This is what I prefer, as I've benefitted from it, but then, others may benefit more from a more conservative treatment approach.)
    Susanne
  15. marcus1243

    marcus1243 New Member

    Or we're talking about different people!
    Since:

    (i)He placed a strong emphasis on supplements.

    (ii) Said that recovery had to come from the indidual in question.

    (iii) Stressed that it was important for the individual to find their own levels, deferring the 'activity' regime to a fatigue specialist.

    Now what this likely means is that he has modified his opinions in line with the findings of clinical trials. Which has to be a good thing, no?

    And yes, I share your opinion of Hyams -- his is the way to go if you want to look into environental toxins, mercury poisoning etc. And I think his work with Cheney is the US is a major positive. BUT: what Findley is stressing is a rehabilitative program that has a good rate of success with a broad base of CFS patients. I'm sorry that your experience with him wasn't good, and I'm very glad that you've found successful treatment elsewhere. But ultimately, I don't care who helps my girlfriend to get better -- if Findley's regime fails, we'll go elsewhere -- but much of what he said made a lot of sense, and it's worth trying.

    That's my take on it.
    --marcus
  16. pam_d

    pam_d New Member

    Sounds like you are still having great success with the Aloe-Vera Gel!! Thanks again for cluing me in!

    Do you still feel that it is helping the tingling??

    I have tracked it down here in the US; it comes in flavors which the local storekeeper says taste pretty tolerable (he stopped short of "good"!) plus the plain variety.

    I need to first clear this with my FM allergist (I am allergic to so many trees/plants/grasses I want to make sure it's OK for me to ingest this stuff) but I'll see him Thursday. Please let me know if it's still helping the parasthesia stuff-hope it is!!

    Thanks, & and for the info above,
    Pam
  17. Mikie

    Mikie Moderator

    You are both right.

    Marcus, we do not know exactly and completely how each medication we take works in the body. That is how off-label uses are found for medications. Many are found to have beneficial effects not expected in the beginning. Again, I appreciate your sharing this info with us. I continue to believe, however, that many people need treatment beyond the protocol being used. But hey, if they are getting results, great!

    Jelly, I know there are a lot of people who get good results with Elavil and I believe that whatever works for us is the best thing. "Worst Pills Best Pills" states that this med should not be used because it has more harmful side effects than other antidepressants in the same drug family. I thought it was a miracle drug when I first started taking it because it allowed me to fall asleep and sleep all night. The problem was that it didn't address quality sleep, at least in my case, and I awoke groggy and fatigued. It also packed 20 extra pounds on me in a very short period of time. It is obviously not the drug for me. It does sound as though it is the one for you and I am happy for you that it is working.

    Love, Mikie
  18. Jasmine

    Jasmine New Member

    Marcus,
    Thanks so much for posting the information about your doctor. Could you please tell me exactly how the Aloe Vera Gel has helped you? I would be very interested in hearing about the aloe vera. I'm always looking for new supplements to try. Thanks.

    Love, Jasmine
  19. marcus1243

    marcus1243 New Member

    Wow, this one has gotten a lot bigger than I thought it would! I originally posted the info purely as an insight into a particular approach, and I'm certainly not an apologist or advocate for any doctor in particular (other than the one who eventually cures me!).

    It seems that several of Professor Findley's patients have been less than impressed with his protocol. I can't comment on that, because I haven't seen it through. Barb, I thank you for your comments, and we'll bear them in mind when following the protocol. If it doesn't work, then we have Dr. Hyams to see, and we can then perhaps undertake a more exhaustive testing/screening procedure. Allow me to put all this into context though: in the UK, there are still a great many physicians and consultants who don't believe in M.E/CFS (I include in this 2 neurologists I have personally seen -- my pcp also doesn't believe in Fibromyalgia). To find a consultant neurologist -- who traditionally deals with pathologically obvious diseases -- that both believes in and is committed to healing the syndrome that is CFS, is a godsend in itself. I didn't speak with him for a very long time, but I fired some pretty searching questions at him and he fielded them pretty well. For my girlfriend -- who has been misdiagnosed with depression for years (doing her great damage, I might add) -- to hear someone say that the illness is a serious, debilitating and *physical* (NOT psychological!) illness, was a revelation. She is already in a better frame of mind than she has been for a long time simply because she feels she is in good hands. Now I'm bearing all your caveats in mind here, but if this protocol even begins to address the cause of her illness and go a little way to restoring her health, then it's money well spent. And if the protocol can only help her up to a point, then perhaps more exhaustive screening might reveal problems which can be further dealt with. But we are at first base here, and this is a good a point as any from which to start. And I think that's true for many CFS patients, who simply don't have the information or guidance to begin to address their illness.

    On Elavil: I think it's junk. I didn't help me at all, and just made me feel like crap. But that's just me --it *has* helped very many people and it *is* worth trying.

    On Aloe Vera: I first heard of this when my rheumatologist told me they'd had great success with it in the clinic with CFS patients. By great success I'm talking bedridden to almost complete remission over a period of four to six months. I'd heard other good things about it and rang up a rep from Forever Living products to enquire about it. He also told me that it was being used with great success in CFS patients. (But then he would, wouldn't he!) At this point, thinking it was just another snake oil, I ordered some of the 100% stabilized gel as a Health Drink (tastes like cat's pee, btw) just to give it a shot.

    Approximately one month after beginning on this stuff, I can tell you that ALL my numbness and tingling is GONE, my muscle weakness is much reduced, and my vision is less blurry. I'm generally feeling better than I have for ages.
    Now this might be complete coincidence, but when you look at the chemistry of this stuff, it's packed with antioxidants, minerals and vitamins. It's also quite a potent anti-inflammatory and detoxifier. Again, maybe co-incidence, and I should add that I also take Glucosomine, Chondroitin and MSM complex, Co-Q10 and Ginkgo Biloba, so maybe something is working in synergy here. But I do know that the changes only really began when I began the Aloe therapy. (I should also add that Aloe functions as an anti-fungal agent, and I have a candida infection). Now I would never push this stuff on anybody, but there are the facts -- make of them what you will. Apparently, the Aloe treatment doesn't reach its maximum effect until 4 months duration. All I know is that if I continue on this upward spiral, then something incredible might happen for me here, and I never thought I'd be able to say that.

    Pam -- I reckon you should give it a shot. What have you got to lose?

    --marcus

  20. Fibromiester

    Fibromiester New Member

    Hey, Marcus!
    I've been reading for, what?, an 1/2 hr. or so! Fascinating! And I agree with you all! We each have our own "pet" notion of dealing with our DD's. We are not right or wrong, we are all learning, and that's why we're here. I Love this board since finding the site last December...I was sick and tired and desperate! Anyway....
    About ALOE- It WILL Block the GUAI. So one or the other. I have been on Rx Guai for several years, and have decided because of IBS,to go off it. I even think it may have Caused some stomach problems, I'm not sure. But Aloe is certainly healing to the system, in theory, so I've been trying it for a short time now(it doesn't taste THAT bad!).
    I also have a Candida problem, so the more help with that, the better. And WOW the Sleep problem makes sense! I have had insomnia for months now, and all my FM/CFIDS Symptoms are getting worse...I will try to take my sleep meds when I should and stay awake during daytime! Does Melatonin help anyone? I've been taking it at dusk and it doesn't slow me down a bit, even though I get only a little, or no sleep at all. Well, thanks to all who have shared here,
    Fibromiester