BBC: Research in Norwich could offer ME/CFS breakthrough

BBC: Research in Norwich could offer ME/CFS breakthrough


hello and welcome to lookie in the program tonight living with Emmy and how research in Norwich could offer a real breakthrough it’s very promising I think it gives hope now for probably the first time that there could be a treatment for for this devastating disorder the merger which is about to create the biggest district council in the country Rati as you’ve never seen him before and I’m here in Stevenage where astronaut tim peake is inspiring the next generation [Music] hello an international center for research into the causes of any is being set up in Norwich scientists told look east today they are making real breakthroughs in finding a treatment for the condition which is also known as chronic fatigue syndrome it’s thought 250,000 people across the country are affected by Emme and so far there is no effective treatment the most common symptoms are severe fatigue painful muscles and joints and poor memory and concentration now scientists in Norwich are planning to trial a cancer drug which has been found to help patients with any in Norway the research in this region has been crowd funded by ME suffers like Rosalind a more from berries and Edmund she’s so affected by the illness she spends her life in bed in semi-darkness and can only speak in a whisper Mike Liggins has been to meet her arriving at Rosalind a Moores home the first thing you notice is the sign on the door it says very ill person lives here please do not not that’s because Rosalind can’t tolerate too much noise or too much light Rosalind was diagnosed with Emmy at the age of 8 she’s now 25 conversations have to be conducted in a whisper Rosalind a Moore’s health improved when she was 15 at that time she could walk a little and stand and be using a wheelchair outdoors but four years ago Rosalind had a relapse and today she can’t get out of bed is partly fed by tube and also uses hand gestures to communicate you must get down today’s legend won’t be until I weigh into my diet I’ve made hey hi they are despite everything Rosalind remains positive she writes a blog for the invest in Emmy research charity and helps to raise money for them now that she can actually use an iPad and connect to the rest of the world again immediately she’s back in charge part of the team and you know the fact that she can contribute to the blog and writing is what she loves to do generally education do you think that might come one day Rosalind loves the outdoors but hasn’t been in the garden for years she is following the developments in Emmy research closely but is also realistic about what the future might hold Mike Megan’s BBC Look East bearish and Edmunds well the new research is offering hope in Norway they found that a drug normally used to treat cancer has helped people with their me now those same scientists have come to nourish to talk about a trial of that same drug hear this from embalmer nor Halligan I put clear an epilogue Emmy has always been seen as a condition that’s in the mind but now scientists in Norway are confident they could be on the verge of a breakthrough to show that in fact it’s a physical disorder until now there’s been no effective treatments but a commonly used cancer drug has delivered a big improvement in symptoms we had a few patients who had long-standing severe and me who got lymphoma and we saw dust when they got lymphoma treatment chemotherapy and all the drugs rituximab there seems to have a benefit from that treatment on their Emmy symptoms the Norwegian research looks at the way sugar is converted into energy in the blood and that’s closely related to research into Emmy that’s underway in Norwich the experts from Norway are in Norwich now to help plan for a big upcoming trial here I think it’s very exciting it’s very promising I think it gives hope now for probably the first time that there could be a treatment for this devastating disorder Norwich is becoming a National Centre for the study of MA next year the work will move into the quad room Institute which is opening on the Norwich research park and by the end of 2018 the major trial using the same cancer drug rituximab will start at the Norfolk and Norwich hospital with patients from Norfolk and Suffolk that’s good news for people like Charlotte’s case from Swaffham she’s desperate for an effective treatment for Emmie it’s been a long time coming and I’ve lost the last ten or so years of this of my life to this so I just hope they they have a break through them and can help us out scientists are more confident now that Emmie could be reversible for Charlotte and the quarter of a million UK sufferers that can’t come soon enough Ian’s bomber BBC Look East

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37 thoughts on “BBC: Research in Norwich could offer ME/CFS breakthrough”

  • I pray every day for a cure, i have ME but not as bad as this, i may not manage to get out of my house, but i can pull myself out of bed, Feel for her 🙁

  • Excellent coverage, which is very rare in UK. Amazing job by BBC. Huge gratitude to Fluge and Mella. Norwich Hosp and all involved.

  • Had ME for 20 years. Nearly a third of my life.
    The timeline for a cure is too slow from a personal point of view. Trials by 2018 means if this treatment is a success, it won't be viable for years yet.

    All I want is that a cure is made asap for the sake of young people and new sufferers so they don't have to go through what we have had to.
    And am still angry at the time and resources wasted by the Psychologists/medical insurance companies, who should be thoroughly ashamed of themselves

  • We all try and stay positive watching the world go by, praying for a treatment or cure. The only way was to help ourselves by fundraising for Invest in ME. Thank you Rosalin for a great interview and Invest in ME for giving us hope. X

  • Millicent Evans says:

    I hope and pray this treatment can be given to all suffers because it's a terrible illness and we all need to live and be happy and not live a life of chronic pain and depression it's been my faith in god and my family that's kept me going all these years as it started for me in my early thirties I am in my early fifties and it's been a battle to keep sane god bless the doctors

  • Thank you for uploading this so promptly. There was a slightly longer report on the late evening news, so people might like to share the link while it's available to view on the BBC site – http://www.bbc.co.uk/iplayer/episode/b08bbztq/look-east-late-news-26012017

  • https://www.skrivunder.net/din_patientsikkerhed

    Help the Danes…it is happening again. Find more on my google plus profile.
    Patient unions here are saying no..see the petition. Help us by spreading and/or signing.
    Here it is the Karina case that is happening. And a Danish GP loosing his license for helping.
    All of the world…we need you.

    The next ones being affected are those with allergies, whiplash, irritable bowel syndrome and or/ fibromyalgia.

  • sweetiepienumber1 says:

    Over 20 years for me. It will be a miracle for patients like myself. Make it happen! Thank you for the science based coverage.

  • Meghan-Morgan Shannon says:

    This is great news for those who have been diagnosed with ME or CFS/ME and meet the requirements of B-Cell problems. These cancer specialists are doing careful research work to help this segment of the population diagnosed with ME in Norway.
    The USA introduced the "research definition" CFS, then the UK psychiatrists came out wit a "Clinal definition " of CFS IN 1993. The USA followed with 1994 "clinical " definition.
    Now we are stuck with loosely coined terms, CFS/ME or ME/CFS.

    THE USA IOM, researched CFS CFS/ me for purposes of clarity . The IOM said, "CFS should never have been used ….S.E.I.D. was introduced as temporary name for USA. The IOM dismissed CFS. The USA never used ME, and there for no one in USA knows what it is.
    Studies like the is one is needed . And education needs to be done immediately in the USA on ME and S.E.I.D. Re-education needed on ME and USA's term S.E.I.D., in the rest of the world.

  • Thanks for sharing! Please make any comment to get this info to be more accessible. Just hitting like doesn't help it get recognized. Please correct me if this is no longer true but last I knew the more activity the more accessible the piece is. Blessings to us all!

  • Lorraine Deacons says:

    I really hope and pray that this is a break through for people with me/cfs . It's took almost 11 years of my life . I want to feel alive again and have some pride and dignity again , and to be able to provide for my family again .

  • Aidan G Walsh says:

    Dr. Ian Carrol is finding in CFS/M.E./EDS connective tissue disorders & so called P.O.T.S. also in Parkinson's leakage from spinal fluids from Spine/Brain which usually is not found on MRI but can be seen on CT Myelograms some have had injuries Work or Sports related even surgeries or lumbar punctures procedures they are all leaking it is fixable he says also it is not P.O.T.S. it is

    the result of this leakage & also Chiari malformation found is the result of these Brain fluid leakages they can also have weak Dura from connective tissue genes & some can have bone spurs. They also find multiple leaks in some patients…[email protected] is his email link he put out also a few Youtube Videos as well one is 4 minutes long other is

    about 90 minutes on a Conference he held on his findings…He is to Publish on why MRI misses this diagnosis & also all tests are not 100% accurate on what he refers to as Spontaneous Leaks…One can also have clear fluid drips from Nose that can show spinal fluid content but again it is not diagnostic 100% it gets worse when People with these disorders

    are standing that causes more leakage & severe tachycardia…He has full complete recoveries some can leak again some require Surgery or Glue or Blood patches to seal these areas…One Woman required 3 procedures to fix her issues…

  • Bless that woman I am thankful my illness is not this severe although it's hard my heart goes out to sufferers with this level of disability….fingers and toes crossed

  • 4:36 – "The Norwegian research looks at the way sugar is converted into energy in the blood" ==> PDH and Davis' research, anyone? It's all coming together! Dr Myhill in the UK has been advocating the ketogenic diet for years.

  • The Norwegian team will be visiting Norwich again this autumn, once the results of the Phase 3 trial are unblinded. Latest update: http://www.investinme.org/ce-news-1708-01.shtml

  • Debiella Baldock says:

    Waiting for an appointment with local pain & drugs clinic on iow. They now have the rituximab trial down here and i am hoping and praying to be a relevent candidate for the trial! My M.E has worsened more and more over the last 6 years following swine flue, it is rare i leave the house without my fiance or father here to get me in the car to get anywhere. My little boy is now 12 and i cannot bare to miss sharing anymore of his younger years with him before he is all grown up and off to uni. I do my best to be at his activities when driven there and have found that playing guitar together offers us great time together as guotar is his number one passion and talent so when the pain in my back and arms not too severe he gives me short & sweet guitar lessons. I'm getting married in july and so worried bout the big day. I wont miss it for anything, its just the notion of hiding the pain and exhaustion and feeling more unwell as the day goes on that i am so afraid of. I dont want to ruin the day for my hubby to be, the kids or our family and guests who are all so excited & have moved mountains to help make this wedding possible. I am just so desperate right now. I used to be a dancer, now i can barely walk, i used to be a show jumper but now i cannot ride, i use to be a figure skater, now i cannot tolerate even the cold let alone stay upright on a pair of skatea! I used to be an actively involved mother, my boy and me enjoyed a busy and active life together when he was little, and i've missed out on so much with him since! Thank heavens for the support and love of my parents in helping to raise him and thank heavens he still sees me as his best friend & an awesome mum. But i could do so much more ith and for those around me without this evil disease. And i am hoping this rituximab trial is one that proves helpful for all who suffer M.E! God bless everyone & keep up hope xxx

  • My theory is ME could be a form of migraine. It is in the head or more particularly in the brain where there is a spill over of neurotransmitters hence the neurons are constantly firing signals by releasing glutamate which in fact excites the next neurons which in the same manner excite the former neurons and the loop is established. It comes to brain and nervous system being constantly aroused, which is consecutively depleting energy and oxygen supply. Probably more the latter. Maybe anti epileptic drugs may help for some cases (lamotrigine, levetiracetam) especially if there are concomitant migraine, feelings of being detached, tinnitus, fasciculations and visual snow involved. It’s worth a try at least. And it has to be some kind of a loop if you can stay like that for 9 years with no obvious abnormalities.

  • Angie Mac Raw & More says:

    At last…I'm trying so hard to get the message out on me/cfs…but u think my channel is a bit too raw,but it's gotta be seen as it is…
    .

  • Oliver The Chinchilla says:

    i have ME- can barely hold my phone to type this- how do i sign up to be a test subject- at this point idk what the experiment is- i'll do it

  • Rituximab hasn't proven helpful for the Americans who've tried it. It has helped a few people in Norway. The last I heard on the subject was that the Norwegians possibly had some unique genetic construct that allowed the drug to work for them when it didn't for others. Of course, we have many Norwegians in Minnesota and other states, so there ought to be a few here who could be helped by it. Alternatively, Norwegians may have a different strain of CFS. I'm shocked to see this treatment is still being discussed as the answer.

  • Post-chemotherapy cognitive impairment- chemobrain fog – Please, get to know more about this side effect of chemotherapy drugs/poisons

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