Enlander/Kerr - CFS is in the genes

Discussion in 'Fibromyalgia Main Forum' started by foxglove9922, Oct 21, 2005.

  1. foxglove9922

    foxglove9922 New Member

    ME is in the genes—not in the mind,

    say scientists
    By Nic Fleming, Medical Correspondent


    (Filed: 21/07/2005)



    The belief that chronic fatigue syndrome is "all in the mind" may finally have been laid to rest with the discovery that sufferers have biological abnormalities, researchers claim today.



    The illness makes sufferers feel exhausted. The symptoms, which include weakness, headaches, disrupted sleep patterns and a difficulty in concentrating, have been likened to a bad hangover.



    A team led by Dr Jonathan Kerr, from Imperial College London, has made a breakthrough in research on the illness, which could lead to a blood test for the disorder and drugs to treat it. The research, due to be published in the Journal of Clinical Pathology next month, shows "clear physical changes" in fatigue syndrome sufferers.



    Dr Kerr's team discovered that their white blood cells behaved differently from the cells of non-sufferers. Several cell genes seem to show signs that continuing viral infection is the cause of the condition.



    There are between 120,000 and 250,000 sufferers in Britain. The syndrome has been designated a neurological condition by the World Health Organisation.



    Also known as ME, it has confused scientists for years, with some clinicians dismissing it as a figment of the patients' imagination. Dr Kerr and his team now intend to examine a larger sample of sufferers.



    He said: "The involvement of such genes does seem to fit with the fact that these patients lack energy and suffer fatigue. This research will open the door to development of pharmacological interventions."



    Russell Lane, a neurologist at Charing Cross Hospital in London, said: "This exciting new work shows that some aspects of this complex illness may be understandable in molecular terms and that chronic fatigue syndrome is not a 'made up' illness."



    Dr John Gow, a senior lecturer in clinical neuroscience at the University of Glasgow, is carrying out similar work, using DNA micro-analysis to examine differences in active and inactive genes in sufferers. His preliminary findings support those of Dr Kerr's group.



    Dr Gow's group has identified certain drugs that it hopes to put through trials to see if they can be used to treat fatigue syndrome.



    Dr Charles Shepherd, a medical adviser to the ME Association, said: "This work is very significant. It gives us clues about genetic abnormalities that can guide new research into the causal mechanism of the condition, which hopefully can lead us to novel treatments."



    To read more about the study see:



    http://news.bbc.co.uk/go/pr/fr/-/2/hi/health/4702515.stm



    http://www.newscientist.com/article.ns?id=mg18725093.700







    So far the work has been carried out on 25 patients and 25 healthy controls. Now Dr Kerr 's team is going to be testing 1000 patients. Not only do they hope to find this a diagnostic marker for ME/CFS but also they believe that this will lead to a treatment. Dr Enlander will be taking samples from ME-CFS patients who can get to NYC, the samples will then be sent to Dr Kerr.



    The research is funded by the British CFS Research Foundation & a grant from the National CFIDS foundation.






  2. foxglove9922

    foxglove9922 New Member

    My daughter and I will be part of this exciting study next month. Hopefully, a definitive biomarker is in sight for ME/CFS.

    Anyone else here participating?
  3. rebeccavw

    rebeccavw New Member

    Hi Foxglove

    How did you manage to be involved with this trial ? I know its similar to Dr Gows research in Glasgow isnt it.

    Will you please keep me up to date with what happens. I have had CFS for 7 years and sooooooooo desperate for this research to lead to a treatment.

    thanks
    rebecca
  4. tansy

    tansy New Member

    and it wil provide important clues treatment wise for you both.

    The changed gene expression research in the UK seems to have had little impact on our decision makers; they are on a mission to reduce the numbers on sickness and disability, PWME/CFS, FM, etc are on the hit list. I have sent these research findings to my Govt representative, along with a few choice articles, so at least he had been put in the picture.

    love, Tansy

  5. pastel

    pastel New Member

    great news. How are you participating??

    Love,C
    [This Message was Edited on 10/21/2005]
  6. JenniferAnn539

    JenniferAnn539 New Member

    Debi,

    Thanks for posting this information.

    As you know, I am also a patient of Dr. E's and would be very interested in joining in the study. I will call his office next week to find out how to participate, but in the meantime could you provide more details on how he decides who can be in the study etc...

    Will you find out how your particular genes are expressing?

    How did your recent visit with Dr. Enlander go?

    Has your living situation improved at all and are you feeling better?

    Best wishes to you and your daughter. I hope that you are feeling better.

    Regards,
    Jennifer
    [This Message was Edited on 10/22/2005]
  7. foxglove9922

    foxglove9922 New Member

    Hi Everyone,

    First a bit about my daughter and myself for those who are not familiar with us. I had sudden onset on CFS 4 years ago. My daughter was stricken with mono at age 14 and progressed in a slow downward spiral until we realized that she too was a PWC 2 years ago. Although we both suffer very similarly with classic CFS symptoms our viral and bacterial loads are quite different.

    I had the good fortune to meet Dr. Enlander a few years ago and have made significant progress since working with him as well as my daughter. Although it is a 7 hour bus trip one way to see him, I can't imagine where we'd be without his help. I was so ill in the beginning that I did not have the strength to roll over in bed by myself, couldn't walk to the bathroom by myself, etc. To make matters worse my now exhusband said he could not live with an invalid,,,,,I lost my job, home, and marriage to CFS.

    Fortunately I have wonderful parents that took both my daughter and myself in but I was making no progress with my rhuemy and primary care physician. I was given anti-depressants, speedos (Ritalin, Straterra, Provigil), and pain meds,,,,,not a darn thing that actually helped my illness.

    I began progressing under the care of Dr. E to a point now where I can manage a small 2 bedroom apartment, get my own groceries, prescriptions, attend yoga and pilates classes and ocassionally a dinner out every now and then.

    I have run several things that I've found on the internet across to Dr. E and he is willing to pursue alternative avenues but I must admit this is the first time I've seen him truly believe that something powerful is on the horizon.

    I'm not sure why we were chosen other than our visit timing, our classic CFS symptoms, and possibly the fact that we are genetically linked as mother/daughter. I think many of us can look at family history and perhaps find that we are looking at 3rd generation CFS/FM. My mom has FM, although she plugs along with it with very little medical help,,,,,she pefers diet, exercise, and supplements.

    A bit of a history lesson on CFS can trace this mysterious illness back as far Dr. Shepherd who identified a fatigue flu like disease in 1750. Florence Nightingale also suffered from an overwhelming fatigue that left her bedridden following her campaign in the Crimea. And let's not forget the ME work of Dr. Ramsey in the 1950's.

    A new illness, perhaps not, but we also would not have probably been survivors had we had to hunt for food, draw water from a stream, chop wood to heat and cook, etc. Before electricity, grocery stores, modern medicine,,,,it was survival of the fittest.

    We are fortunate to be in a time where this disease is getting recognition and research is actively being pursued. However, I do agree with Tansy that it is a sad state of affairs in the UK at the moment but hopefully as research progresses and sound clinical data is presented, the powers that be in the UK will be wearing mud on their face for the stupidity of the politics involved. I find it quite ironic that this particular study is being done in London in lieu of "psycobabble theory".

    We travel next month for a blood draw that must be delivered in a precise way and time to the researchers in London. I too hope that we will also be part of the clinical solution...time will tell and I will most definitely be here to share the experience.

    Let's not also forget the incredible work being done by Drs. Cheney and Lerner regarding heart involvement in CFS along with many other studies being performed around the world.

    I feel there is a light at the end of the tunnel and hope in itself is some powerful medicine.

    Dr. Enlander is located in Manhattan at 860 5th Avenue. The study commences next month.

    Best wishes to all.........foxglove
    [This Message was Edited on 10/22/2005]
  8. foxglove9922

    foxglove9922 New Member

    bump for anyone who may have missed this
  9. cherylsue

    cherylsue Member

    Just popped in to wish you well. I am so glad you and your daughter are improving, and that Dr. Englander is helping you.


    I am surviving on my ProBoost. Everyone around me in school is getting sick. I'm keeping my fingers crossed.
    I still have fatigue bouts, but rest and getting enough sleep helps me come back now. Do you know my husband and I saw a Paul MacArtney concert last Wednesday? I would never have dreamed that I could be doing this even last summer. I keep waiting for the shoe to drop. I know I can get this DD again, so that's always in the back of my mind. But hey, enjoy life while you can.

    Best of luck to the both of you.

    CherylSue
  10. foxglove9922

    foxglove9922 New Member

    So nice to hear from you and good to know that you are progressing. I too am continuing the ProBoost and am holding on for a break through.

    I too am here less often and trying to carve out a life for myself without thinking of myself as a "sick" person. I visit about once every 2 weeks just to see if something new is on the horizon.

    Best wishes for continued good health.......foxglove
  11. terra329

    terra329 New Member

    Hi Foxglove,

    I to go to Dr. Enlander - I just have to catch on a train at 14 street to get to his office in a half hour however the wait at his office has sometimes been 2 1/2 hours! I will be doing the study also -- did you particapate in the fish nurotoxin study? I seem to have that nurotoxin - great news! NOT.
    I do see DR. Susan Levine too becasue the wait is shorter and she gives IV drips which he is not in favor of. He like to give let you take those shots every day. NOt a big fan of that shot every day. Is that what improved your functioning??
    I can not wait to see what he says of my crazy IME report that said if I just fixed up problems with my neck and knees and acid reflux I would be as good as new and should start part time work ASAP. I can see his face now - and it is not a happy one.
    You should let me know when you go maybe we can chat as I have no friends with this illness - I might have even seen you there. It can be a very small world at times.