Dr Enlander writes to The Belfast Telegraph

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by tansy, Aug 14, 2007.

  1. tansy

    tansy New Member

    07/31/07

    Letters to Editor
    Belfast Telegraph
    Belfast

    Dear Editor

    I am enthused to see work and research on ME being performed in the City Hospital, Belfast. However I believe that the work being performed in unicentric. It is focused on one parameter, a psychiatric parameter. The focus is to change the mindset of the patient. The thought is that if we change the patient mental outlook and induce Gated Exercise Therapy.(GET), we will cure
    the disease. It is distressing, to me and to my patients, that doctors are still following this destructive approach of labeling patients as psychiatric.

    Let me be emphatic, this is a physical disease.

    The depression in this disease is secondary, it is depressing not to be able to continue one's life. It is depressing to have a career interrupted, a marriage disrupted, a job lost. This depression is caused by the disease and has not caused the disease. GET is not the answer, unfortunately overexercise in fact causes relapse.

    It has been shown by many physicians including myself that Myalgic Encephalitis (ME) or Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) is indeed a physical disease.

    The theory that this is a physical disease is not novel, it was shown by Dr Melvin Ramsey in 1955 when he published a book relating to an outbreak in the Royal Free Hospital, in fact at that time it was initially termed the Royal Free Disease or Post Viral Fatigue. He thought that there was a possibility of a viral infection that gave rise to an overwhelming debilitating fatigue.

    He was much ahead of his time, as today we have several viral and other unknown agents that may be implicated including Human herpes virus 6 (HHV6), Epstein Barr Virus (EBV) and Cytomegalo virus (CMV). It is thought that the methylation cycle is deranged and the immune system is upregulated by this agent, the basis of treatment therefore is physical, a course of immune activant such as Kutapressin or Hepapressin and Immunoprop have been seen to be helpful.

    Interestingly from the Belfast standpoint, we have worked on ME with Dr Jonathan Kerr who like myself is a Belfastman. He has shown genetic change in ME patients, our work will be published shortly.

    Sincerely

    Derek Enlander M.D., M.R.C.S.,L.R.C.P.

    www.enlander.com
  2. flossyfudleFran

    flossyfudleFran New Member

    hi all,
    tansy,thankyou for your very interesting post,i shall be visiting here regularly to see what developes from all of this.

    ive always known that my M.E( my.... e.....virus attack)is a real entity,and that i didnt make myself ill,a virus made me ill.if in the future it turns out that,after all these years of being left on the scrap heap,,im actually contagious,then heads will roll at the dhss.

    kind regards

    fran
  3. Rosiebud

    Rosiebud New Member

    nice to see you here again. I hope you're keeping better.

    Thanks for keeping us up to date with information.

    What do you think of D Enlander's advice on Kutapressin, Hepapressin and Immunoprop. I'd happily ask my GP for a course if it might help.

    It's sad that the the UK is continuing with the psychiatric approach, very scary too.

    love
    Rosie
  4. wld285

    wld285 New Member


    Hi Tansy,
    Thanks so much for this info. I have my first appoint. with Dr. Enlander on Sept. 5th.

    I am very intereted as to where you found this articl. Do you go to Dr. Enlander?

    Linda
  5. Mikie

    Mikie Moderator

    Thanks for posting this. You don't know how good it is to have you back with us again.

    It is interesting that Dr. Enlander mentions the methylation cycle block and genetics. I watched an interesting program segment on "NOVA," which airs on our PBS stations here. I don't know whether or not you get it there. The segment compared young identical twins with old identical twins, looking at their genetics. What was found was astonishing. Young twins had almost identical genetics but older twins had many genetics mutations. This study of environmental influence on genetics is called, epigenetics. It is believed that illness, stress, trauma, and toxins can cause genetic changes. This is the basis for RichvanK's papers on the Methylation Cycle Block Protocol and theory, based on Dr. Yasko's work with autistic children.

    If you can watch this program, I think you would find it interesting. I am starting to believe that we may have a familial genetic predisposition to our illnesses. When enough external stressors produce further genetic changes, we get sick. I am showing progress on the MCP and am hoping that RichvanK is right about it.

    Take care, my friend.

    Love, Mikie
  6. tansy

    tansy New Member

    for example he wrote to Tony Blair when he was our PM and took Wessely to task for the contents of one of his published articles. He, like other ME and CFS doctors, has come to realize they have to be more outspoken and challenge the misrepresentations that are rife, especially in the UK.

    Fran

    Eventually many heads will roll; and personally I cannot wait for that time to come.

    Linda

    I live in the UK so cannot consult Dr Enlander unfortunately.

    Rosie

    It’s worth a try; not all GPs and specialists feel duty bound to just stick with the NICE guidelines generally. Often they will get around it with an additional Dx even if it is part and parcel of the patient’s illness. Let us know how you get on.

    Yes it is scarey. What’s so frightening is how dishonesty and corporate lobbying can dictate policies in spite of all the evidence against them. This applies to many issues here in the UK unfortunately. Did you see the article I posted the link for on the topic – “The Defiance of Science” Prof Malcolm Hooper and Margaret William’s articles may be long, but they are better than anything I can write myself. You can read it at http://www.meactionuk.org.uk/Defiance_of_Science.htm. It’s a good one to send to MPs and SMPs along with the piece entitled “ME the corporate take over of the NHS (UK)” that I also posted here yesterday.

    Mikie

    We have both believed that genetics play a huge role in this, your overview here is excellent. Malcolm Hooper is a brilliant ME, GWS, MCS, Autism champion; he believes ME is about toxins and infections – he recognizes the role of genetics too. Three contributors to this topics, that I know of, have other family members who have related health problems; this adds weight to our beliefs that there’s a “familial genetic predisposition to our illnesses”.

    I was pleased but not surprised Dr Enlander has picked up on methylation issues too; like other specialists, including Dr Myhill, he recognizes there’s a significant % of the population and his patients that are adversely affected by toxins because their bodies are less able to deal with them effectively.

    I’ve not come across Nova which is a shame.

    It’s good to be back though I am overdoing things a bit trying to catch up on everything and putting together some very important documents: I lost a lot of valuable time. Physically I am holding up but had my first bout of emotional liability this morning through raising my levels of cognitive activities too high; I’ve not had that problem for over 6 months, so it was a useful reminder. It makes me appreciate the adverse effects PWME in the UK are experiencing when the “rehabilitation” programmes force them to do the same; at least I can choose to ease off, they’re not allowed to.

    I have missed regular contact with others as well as yourself here.

    I was delighted to see Rich had been presenting his theories at IS; I will watch with interest to see how much it helps others with these DDs. Great news that you find some of his recommendations effective. I see his suggestions as being like using a pilates machine (my means of physical rehab); we know within a relatively short time whether it will help and then the benefits should be accumulative in the long run .

    Take care everyone
    Tansy
  7. Mikie

    Mikie Moderator

    My Mom had FMS, I have ME/CFIDS and FMS, and both my daughters have FMS. I can look back in retrospect and now recognize early warning signs that not all was well. I was one of those kids with "growing pains." The question used to be, "Are we genetically predisposed to these illnesses or do stress, illness, trauma, and infections cause genetic mutations?" We are beginning to suspect that it is usually both but it may be possible to get sick strictly from the mutations. That would explain the differences in so many of us. People with mercury poisoning suffer almost identical symptoms to those with CFIDS. As you know, I will always believe my CFIDS was really GWI triggered by mycoplasma infection which I probably caught from the holiday shopping crowds near a military facility. ME/CFIDS may well be an umbrella term for a lot of different symptoms, triggered by a variety of things. These are fascinating things to ponder and I'm glad that attention is being focused on them. Answers may well be long in coming but at least now, we're asking the questions.

    I just saw my doc to make sure my UTI is cleared up--it is. I also wanted him to check my lungs and they are clear too. Finally, I wanted to document that the failed work attempt caused me to get sick in case SSD decides to review my case. I called to report the failed work attempt to them this morning. We do have to learn the game and dance to the govt.'s tune.

    The sharing of info is getting phenomenal and I am hoping this methylation cycle block treatment will lead to healing and a possible cure. Only time will tell.

    Love, Mikie
  8. wrthster

    wrthster New Member

    Thank you for posting this, I have my first appointment with Dr. Enlander the end of this month. It is really good to see that he wrote this and spoke up. It says a lot about his character, and makes me feel that I made the right choice in choosing him! Thanks!
  9. tansy

    tansy New Member

    Good luck with your appointment. Do let us know how how it all goes.

    TC, Tansy[This Message was Edited on 08/16/2007]
  10. Mikie

    Mikie Moderator

    People believed that asthma was caused by emotional reactions. Seems that people often blame mental states for conditions they do not understand. Fortunately, this is slowly changing.

    Love, Mikie
  11. wrthster

    wrthster New Member

    I will keep you posted
  12. tansy

    tansy New Member

    - supported by our CFS and CFIDS organizations?"

    The invention of the CFS term and its vague definitions have been a terrible
    insult and injustice to the human rights of patients suffering systemic
    medical neglect of the most debilitating epidemic disease currently sweeping
    the planet. Now that awareness of the history preceding the imposition of
    this damaging terminology has become well known around the world, the WHO
    classified and scientifically confirmed disease Myalgic Encephalomyelitis
    and its definitions remain the only legal and moral terminology acceptable.

    The WHO ICD and the CDC must update the neurological classification of ME as
    confirmed by the Ramsay, Canadian Consensus and Hyde definitions, and they
    must remove Chronic Fatigue Syndrome from the same neurogenic category - CFS
    by its various definitions is not a neurological condition nor a synonym for
    ME. CFS is a diagnosis of exclusion and therefore it does not describe any
    disease process, it is just a label for any undiagnosed condition presenting
    with chronic fatigue as a symptom. All patients deserve a proper medical
    diagnosis, not a CFS label and misguided psychiatric interventions that do
    cause harm to those suffering from neurological ME.

    The trivialising and insulting term CFS has resulted in the loss of 20 years
    funding for thorough research and treatments - this funding has been wasted
    on useless fatigue and behavioural studies and the distracting invention of
    the biopsychosocial model and functional somatic syndromes, despite the 50
    years of increasing scientific and genetic evidence for the serious
    pathophysiology of Myalgic Encephalomyelitis. The correlation of outbreaks
    of ME and Poliomyelitis that were documented from 1934 and which provide
    important clues to the aetiology of the disease have also been negligently
    overlooked.

    The government needs to be reminded of its legal and constitutional
    obligation to urgently fund biomedical research and education of the medical
    community to uphold the rights of ME patients to be diagnosed and treated
    with as much dignity as any other severely disabling neurological condition
    is awarded. Further, any "fatigued" patient who does not fit the ME
    diagnosis has the right to an accurate diagnosis and treatment of the
    underlying medical condition that is currently being mislabelled as CFS.

    There is no formal education of the medical community and doctors are so
    misinformed, untrained and inexperienced that they cannot diagnose and treat
    these severely ill patients in the mistaken belief that they suffer from
    some unimportant fatiguing state they only know as CFS. Some patients have
    lost their lives to ME because they were unable to find a doctor who
    believed in them. So many of us struggle to find a doctor who knows
    anything about this disease or how to treat it and we are left to manage
    this disease ourselves. Where are our basic human rights here?

    The information promoted by the CDC's CFS website, its PR marketing company
    the CFIDS Association of America (CAA), and their CFS Awareness Campaign is
    a huge disservice to all patients and researchers. They incorrectly state
    that there are no diagnostic tests or treatments, there is no mention of ME
    as the distinct neurological disease recognised since 1956 and classified by
    the WHO since 1969, no justification for the invention of CFS to replace ME
    in 1988, or serious investigation of the missed diagnosis of other
    conditions hiding behind the obfuscation of CFS.

    There is no mention of the internationally acclaimed Canadian Consensus
    Guidelines, the Ramsay and Hyde definitions, or the documented epidemics
    dating back to the 1934 Los Angeles outbreak - yes the first recorded
    outbreak of ME occurred in America! The "evidence" is further skewed by the
    flawed CDC genetic research which selectively supports "allostatic stress" -
    while ignoring the neurological, immune, cardiac, mitochondrial dysfunction
    and evidence of persistent viral infection found by Dr Jonathon Kerr's
    genetic research published in the Journal of Clinical Pathology.

    Changing the name to Myalgic Encephalopathy with a CFS based definition is
    another unjustified and damaging name change. Current research presented as
    recently as the 8th International IACFS/ME Conference supports the historic
    name and definitions of Myalgic Encephalomyelitis with more evidence of CNS
    inflammation, vasculitis and myelin damage. However "encephalopathy" can be
    taken to mean "altered brain state" which together with a CFS based
    definition will only compound the misconceptions and invite further
    irresponsible psychiatric interventions that have damaged patients and taken
    precious funding away from essential biomedical research.

    And so it will get worse. The CDC will find a way to inflate the numbers of
    fatigued people to fit their made-up definition of Chronic Fatigue Syndrome
    under the name Myalgic Encephalopathy and the CAA will get more funding for
    an even greater PR campaign. The CDC will then justify the need for even
    more government funding for research into this alleged "allostatic stress
    syndrome", which will only result in psychiatrists also benefiting
    financially to do even more irrelevant fatigue and behavioural studies,
    while ignoring the real suffering and growing death toll from Myalgic
    Encephalomyelitis.

    It is "all in their heads" if they believe that they can cure a neurological
    disease with CBT and GET. It is very concerning that so much obvious
    misinformation can be presented as fact. As a consequence I am beginning to
    question whether the media hype about the potential "bird flu" epidemic is
    nothing more than a fear tactic to cover the real ME pandemic that is
    currently devastating millions of lives around the world. They are spending
    billions of dollars stockpiling antiviral medications for something that may
    never happen, and failing to provide antiviral and other treatments now for
    those desperately suffering or dying from this debilitating disease.

    It is also a concern that are there still so many CFS and CFIDS charities
    perpetuating the misinformation and myths about CFS. Why do so many of
    these organizations remain ignorant of the most critical and basic facts
    which have damaged all of us for the last 20 years? If they do not know the
    70 year history of Myalgic Encephalomyelitis and its epidemic association
    with Poliomyelitis, and are not promoting Myalgic Encephalomyelitis and its
    definitions, the longstanding WHO neurological classification, or declaring
    the scientific evidence and diagnostic tests that do confirm the disease,
    then who are they advocating for and how do they justify their existence?

    There are genuine ME charities and some very dedicated researchers that
    desperately need our support and deserve our gratitude for their tireless
    efforts advocating for the recognition and scientific understanding of
    Myalgic Encephalomyelitis. When will the government and the CFS/CFIDS
    charities also act responsibly and ethically to fund and promote genuine
    education, research and treatment of this disabling epidemic disease?

    John Anderson

    Permission to repost
  13. tansy

    tansy New Member

    disorders report a cessation of their symptoms as a result of Tx aimed at infections, toxins, + +; is it not better to aim for treating the root causes rather than relying on meds which are often poorly tolerated in these DDs?

    Nofool I know you have a problem with many of the Tx featured here; but one thing they have in common is that when they're successful in bringing about a remission, among the improvements reported are no more symptoms related to depression and/or anxiety.

    I have no problems with PWME/CFS seeking help for their depression and anxiety in the short term; but what they really need is help with identifying what has triggered and sustains those Sx. Co morbid depression and anxiety should be treated; and I doubt anyone has issues with that.

    In the UK we have a group of psychiatrists who have turned a predominantly physiological disorder into hysteria/functional somatic disorder/ psychosomatic/ “malingerers charter”. One member of the Wessely School even received an honours award for his services to education - he is Professor Peter White, Chair of Psychosomatic Medicine.

    The Wessely School created the Oxford Criteria which means anyone who complains of fatigue gets a Dx of CFS.

    The Wessely School, working alongside the Insurance Industry, have been the driving force behind the policies adopted in the UK. As a result PWME/CFS will only be offered inappropriate CBT and graded exercise programmes. I say inappropriate because they are based on a different perception of these DDs, and most who fulfill the stricter definitions of ME/CFS are made more ill by them. The majority of patients referred to state funded Specialist Clinics are not investigated properly; that would be pandering to their misguided illness beliefs or their secondary gains. The rate of misDx of CFS in the UK is high.

    Nofool whilst I understand where you are coming from it seems to me that your need to have neuropsychiatric symptoms recognised has overridden your ability to understand the wider picture and especially the situation in the UK. Dr Enlander’s comments, in his letter to a *UK* newspaper, have been welcomed by everyone else who has posted on this thread.

    TC, Tansy[This Message was Edited on 08/19/2007]
  14. tansy

    tansy New Member

    I read Goldstein’s paper soon after it was published but that was a long time ago; it is no doubt stored away in my paperwork files. His scans, and how the findings were interpreted, are often referred to by patient advocates in the UK. I have his book “Chronic Fatigue Syndrome A Struggle for Health” and chapter 6 is entitled “CFS is Not Depression”. A local patient flew to the US to consult Dr Goldstein so I’ve learned about his Tx, and explanations for them, from several sources.

    I am sure PWME in the UK appreciated Dr Enlander’s recommendation for Tx; we also welcome his involvement in Dr Kerr’s gene expression research. It is necessary to make strong statements, such as the one you objected to, since doctors here have been led to believe otherwise and told there are no viable/proven alternatives to CBT and GET.

    When commenting on your dislike of some of the Tx here, perhaps I should have made it clear that I was referring to your contributions to discussions on other topics, not the Tx Dr Enlander referred to above.

    I have to disagree with your comment that you know what’s going on in the UK and that is has nothing to do with Dr Enlander’s letter. On the contrary having a more complete understanding of the situation in the UK is the reason Dr Enlander wrote this particular letter to the editor of The Belfast Telegraph.

    TC, Tansy[This Message was Edited on 08/20/2007]
  15. wld285

    wld285 New Member

    I have been watching this post closely since I have my first appoint. with Dr. Enlander coming up.

    I do not understand where some of you are coming from. Most of us,(including myself), do have depression. But there is a physical reason, not psychiatric.

    Dr. Enlander is saying you need to treat the person physically, not as if it is a psychiatric disorder. How very true this is!!

    Someone please try to explain to me how you interpreting this, I just don't understand. I found the article to explain exactly what I have been telling all these docs for years. Yes I am depressed, but treating my depression is not going to make me well again.

    Linda
    [This Message was Edited on 08/22/2007]
  16. tansy

    tansy New Member

    Hi Linda and Erik

    Thank you both for putting this so succinctly.

    Linda, only one contributor to this topic has a problem with Dr Enlander's letter. He clarifies the situation well - "It is distressing, to me and to my patients, that doctors are still following this destructive approach of labeling patients as psychiatric.
    Let me be emphatic, this is a physical disease."

    You covered this well when you wrote: “Dr. Enlander is saying you need to treat the person physically, not as if it is a psychiatric disorder” & “I found the article to explain exactly what I have been telling all these docs for years”

    TC, Tansy[This Message was Edited on 08/22/2007]
  17. tansy

    tansy New Member

    Hi Nofool

    You wrote

    *Some of us with CFS, like myself, decided long ago to stop using CFS as a Dx. We go with Dxes by symptoms/specialties.

    For instance, I have a gastroenterologist for GERD/Barrett's, a neurologist for PLMD and POTS, an endocrinologist for endocrine disorders, etc... I don't need to have CFS. Each Dr. helps me within their specialty. I don't care if they fail to get the bigger picture. For the time being it's not essential.

    Have any ME patients tried a similar approach? If not why not?*

    In an earlier post I suggested you had a less complete understanding of the situation in the UK than Dr Enlander. Thanks to Nijmegen/Wessely schools any attempts to do this are frequently interpretted as illness seeking behaviour; so tests and investigations are not recommended. Our health system means that once Dx with ME or CFS it remains on your medical records, and most doctors refer to these. Medical reports cannot be removed, patients can ask for statements to be added to their medical records countering misinformation, but doing so is often seen as proof of the claims made by the Nijmegen/Wessely schools.

    TC, Tansy
  18. tansy

    tansy New Member

    that frequently happens. It’s not that the medical system here is all bad it’s just that the psychiatric lobby have managed to manipulate national policy and many doctors’ attitudes.

    When patients are fortunate enough to get related problems Dx it’s assumed they will recover when they’re treated; when they don’t it’s back to square one for them.

    Even when abnormalities turn up they’re ignored by those who subscribe to Wessely et al’s opinions, in the same circumstances other patients would have them followed through. Likewise where regular follow ups are the norm PWME are dropped asap so as to avoid pandering to their illness seeking behaviour. Medical neglect and abuse of PWME here is still common place. Co morbid treatable conditions are often picked up too late, this is a real concern where successful outcomes are dependant upon an early Dx.

    TC, Tansy
  19. ZahraK

    ZahraK New Member

    An interesting conversation going on here about ME and depression. I was diagnosed with ME in the UK. I went to see a psychiatrist. He diagnosed me with ME and depression, put me on prozac and told me to pace. After time off work I improved, he declared me as recovered (and wrote to my GP saying so) but as soon as I tried to get back to normal life of course I relapsed.

    Fortunately I moved out to NY for my husbands job and started seeing Dr Enlander. He did give me prozac for my associated depression but also prescribed me anti virals. It hasn't been until the valcyte kicked in recently and I'm not in pain anymore that I dont feel in the slightest depressed. I think the depression came from feeling like I had the flu all day (and not necessarily a chemical imbalance directly caused by the ME) and treating the underlying cause has totally cleared it up!!

    The UK has a totally different attitude to the US when it comes to ME treatment. The only people who treat it seem to be psychiatrists who won't prescribe anti virals.
  20. wld285

    wld285 New Member


    I have read and re-read Dr. Enlander's letter to the editor. I know I am getting old and the DD takes a toll on your mind and body, then when you add age it gets even worse. You are lucky, since I assume you are still young, you have the advantage of the research and knowledge some doctors now have to work with.

    In the 80's I was told by a Natural Healing Clinic I found (some distance away), that I had Epstein Barre Virus. Then it was al supplements.....I remember they had me taking 12 tryptophan, amoung other things for sleep. Needless to say, it was thousands of $ that did nothing for me.

    It has only been in the past 2 yrs. I could put a name on what I have, and I could find a doctor who had some knowledge to treat me.

    Anyway, I fail to see your interpretation of Dr. Enlander's letter. I really appreciate it when people take the time to post these bits of information, gives me another little ray of hope and insight that says "moving forward".

    It does anger me when so much time is spent pulling something apart and spoil the goodness. If I had said what I wanted to say, I would be booted off the board, and this is a world of information and learning for me.

    Linda