Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Can I have your input/opinion on this please, I'd really appreciate it

Discussion in 'General ME/CFS Discussion' started by Fat Viking, Jan 26, 2017.

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Which Specialist should I see privately?

  1. Dr William Weir

    2 vote(s)
    66.7%
  2. Dr Amolak Bansal

    1 vote(s)
    33.3%
  3. Dr Vanya Gant

    0 vote(s)
    0.0%
  1. Fat Viking

    Fat Viking

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    I received HEPATITIS B VACCINE on my left shoulder about five years ago; back then I was a regular at GYM- used to lift 100 pounds without much unease; used to do treadmill walking without getting exhausted; no persistent pain anywhere in the body.

    Post vaccination, I started experiencing various ACHES AND PAIN - started with left shoulder pain spontaneously (just the left not the right) making me unable to lift even half the weights i.e. 50 pounds (used to lift 100 pounds earlier).

    Thereafter series of unexplained pain started; my toes began to hurt while walking - sometimes left and sometimes right. The pain isn’t there at rest. I am sure it is not due to shoes, as the pain occurs irrespective of the type of shoes I wear.

    Following the vaccination, there is also perceivable significant LOSS IN STAMINA; I experience breathlessness in the initial phase of walking on the treadmill - earlier I used to walk on treadmill for quite some time with ease. I have muscle spasms, and joint pains (without inflammation) in random parts of my body.

    There is persistent feeling of fatigue; exhaustion which does not alleviate with rest.

    Also, my sleep is affected, I wake up feeling unrefreshed and am unable to concentrate in my daily activities.

    Also, to add on, there is a continous pain that I experience in my LEFT UPPER ABDOMEN in a specific area whilst sitting. Hence I feel very uncomfortable whenever I am seated on a chair or a couch, or in the bus. The pain I perceive is connected to posture and a change in the same eliminates it; which makes me feel that it is muscular in origin. There is no abdominal pain when I am standing or lying down. No pain medicines have helped so far. I am sure the cause does not lie in the digestive tract i.e. stomach, small intestines or large intestines as I don’t have any indigestion problem... my appetite is just fine, I eat well and at proper times.

    To summarise my agony- I was absolutely alright and pain free 4-years ago; before I received the HEPATITIS B VACCINE, used to work out regularly. But now, I am left debilitated, feel tired all the time.

    What I've done so far. Had 14 blood tests including Rheumatology blood tests all the 14 blood test came back fine.

    I did Ultrasound which showed Hepatic Steatosis and the rest of the organs were of 'normal appearance'.

    Dr Charles Shepherd suggested Dr William Weir. A lot of good things about him with CFS/ME, he is a Infectious Disease Specialist who apparently has been involved in vaccine related cases but none have gone to Court, Dr William Weir is in Transcendental Meditation and that he also gives prevalence to issues being stress related and psychosomatic? If that is the case then I see why none of his vaccine related cases never went to court.
    http://www.me-ireland.com/weir.htm
    http://uk.tm.org/stress-reduction

    Then there's Dr Amolak Bansal who is an Immunologist who's interest is Infectious Diseases. Lot of good things about him with CFS/ME. Dr Charles Shepherd suggested him and also suggested by Dr Chris Jenner from the London Pain Clinic who was one of the Doctors from the 2013 Tatler doctors guide.
    https://www.epsom-sthelier.nhs.uk/consultants/?consultant=234
    https://www.spirehealthcare.com/consultant-profiles/dr-amolak-bansal-c2568454/

    Last but not least there's Dr Vanya Gant, who is an Infectious Disease Specialist. When I contacted the Physician's Clinic one of the Specialist said to see Dr Vanya Gant, and other doctors who previously suggested to see Dr Paul Glynne, after I told them what Dr Paul Glynne said (that he doesn't want to waste my time as he feels he is unable to help me), those Doctors said to see Dr Vanya Gant.
    https://thephysiciansclinic.co.uk/physicians/dr-vanya-gant
    https://www.uclh.nhs.uk/OurServices/Consultants/Pages/DrVanyaGant.aspx

    So now I have to decide who would be best to see and help me. Who is the best person to help me?

    Thanks to all that respond! :)
     
    Last edited: Jan 27, 2017
  2. KME

    KME

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    Ireland
    Just a brief note about Dr William Weir. He's a goodie. He has been my doctor for 4 years and does not think ME is psychosomatic or stress-related, quite the opposite. He is consistently extremely critical of PACE and all psychologising of ME. He does recommend meditation among many other things (pacing, supplements, diet changes, medications) to help manage ME, and because he personally had a good experience with TM, he suggests this, but he is not pushy about it at all. He wrote excellent reports for me that were key to me getting ill-health retirement and social welfare payments. His input has greatly improved my GP's approach too. He made sure to write a letter to my GP to explain why a rheumatologist's recommendation of exercise was "the last thing" I should do. Believe me, I've encountered many doctors who psychologise ME to a greater or lesser extent, and Dr Weir is not one of them.

    I'm not familiar with the other doctors you mention, so cannot give any opinion as to which might be better for your particular case. My own experience is that if you have or might have ME, getting the opinion of an ME specialist is key, and can protect you from harmful recommendations and misdiagnoses. I would trust Dr Shepherd's recommendations as he gets feedback from so many patients. These things are very personal and you may have to work through a few doctors before you find someone who you feel most comfortable with.
     
  3. ukxmrv

    ukxmrv Senior Member

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    London
    Personally I'd see Dr William Weir unless someone can give you a good accounting for Dr Gant from actual patients.

    Dr Gant looks good on paper but he works at the National Hospital for Neurology which is infamous for treating PWME (including myself) very badly.

    I've met both Dr Weir and Dr Bansal. I'd not say that Dr Weir "gives prevalence to issues being stress related".

    If you are thinking of a court case then it's going to be a big uphill battle (but you probably know that). I have some experience (not related to ME or vaccine damage). Finding medical experts / evidence is very hard. Dr Weir may not have got cases to court but he does write reports and will know what the obstacles are.

    Not sure if Professor Brostoff is still seeing patients ? but he could be another alternative and he did use to write medical reports for legal matters. I think he also appeared as an expert witness in court.

    (just found this link)

    http://www.londonallergyspecialists.co.uk/prof-jonathan-brostoff
     
    Last edited: Jan 26, 2017
    Fat Viking, KME and sarah darwins like this.
  4. Fat Viking

    Fat Viking

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    Any other patients of either Specialist would like to come forward?
     
  5. Jonathan Edwards

    Jonathan Edwards Senior Member

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    I am not a patient but I know all three doctors very well. They are all people with a wide perspective and common sense who understand ME. I guess the question is what your objectives are. If you are interested in litigation, that is something quite different from asking for advice on how to manage. I have no idea whether any of these three would want to get involved in litigation. Normally a doctor being asked to get involved in legal issues would be approached through a solicitor.
     
    Fat Viking likes this.
  6. Fat Viking

    Fat Viking

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    As I understand it, to start a legal case in Personal Injury/Medical Negligence one must first have a diagnosis. I am yet to have a diagnosis, so that's what I am looking for, a diagnosis by a Doctor/Specialist. I don't have a lot of money so I can't try out different doctors and see which one suits me. I don't want to waste either of those Doctors/Specialists time if they feel they are unable to help me. I am interested in litigation but they don't need to get involved in my claim, I just need a diagnosis from them, so based on that, who is best to help me get a diagnosis in your honest opinion?
     
    Last edited: Jan 27, 2017
  7. charles shepherd

    charles shepherd Senior Member

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    I have already passed on some basic MEA information (below) on the links between vaccines and ME/CFS and mentioned some of the doctors in the London area who could be approached

    I probably have the largest collection of patients and patient evidence here in the UK on vaccine triggered ME/CFS, especially hepatitis B vaccine - where most cases relate to people being given this vaccine as a condition of employment (NHS in particular)

    I have been involved in a number of legal cases involving hepatitis B vaccine and ME/CFS but none of these cases has ever proceeded to court - partly because of the lack of any epidemiological evidence support a link

    There is one HBV and ME/CFS case in the USA that has gone to court but I'm not sure of the current status of this claim

    Also worth noting that the UK Chief Medical Officer's Working Group Report, which I helped to write, refers to vaccinations as a trigger factor

    The CMO report can be downloaded from the document archive section on the MEA website: www.meassociation.org.uk

    General information from the MEA on vaccines and ME/CFS

    Anecdotal evidence indicates that a number of vaccinations are occasionally capable of either triggering ME/CFS, or causing an exacerbation of pre-existing symptoms, and the UK CMO Working Group report acknowledged (in section 3.3.2) that vaccinations can occasionally act as a trigger factor in the development of ME/CFS. The CMO report can be e-accessed using the document archive on the MEA website: www.meassociation.org.uk

    The link is biologically plausible but there hasn't been any really robust research carried out to investigate the role of vaccinations as immune system stressors in the causation of ME/CFS.

    Two fairly recent published reports of interest relate to an MHRA review of HPV vaccine (Cervarix) and ME/CFS >>

    http://www.mhra.gov.uk/NewsCentre/Pressreleases/CON316330

    and two case reports re Swine Flu vaccine and ME/CFS:

    http://www.meassociation.org.uk/201...accination-bmj-rapid-responses-21-march-2014/

    I have a longstanding interest in the role of vaccinations in ME/CFS and my patient evidence on the subject, which is now quite substantial and includes a number of health workers who were vaccinated almost as a condition of employment, indicates that hepatitis B vaccine appears to play an unusual and significant role here

    This is supported by the results of the MEA website poll on the roll of vaccinations as trigger factors for ME/CFS (see below)

    The MEA has an information leaflet which summaries the research evidence relating to vaccinations and ME/CFS.

    Similar information is summarised and referenced in the MEA purple book.

    MEA WEBSITE POLL:



    • If your ME/CFS was triggered by a vaccination, which vaccine was involved?
      • Hepatitis B (57%, 338 Votes)

      • Flu (9%, 51 Votes)

      • Other (7%, 41 Votes)

      • BCG (6%, 33 Votes)

      • Cannot remember (5%, 31 Votes)

      • Combination (5%, 27 Votes)

      • Tetanus (3%, 18 Votes)

      • Meningitis (3%, 17 Votes)

      • MMR (2%, 14 Votes)

      • Polio (2%, 10 Votes)

      • Hepatitis A (1%, 7 Votes)

      • Typhoid (0%, 4 Votes)


        Total Voters: 591
    Start Date: April 30, 2010 @ 3:20 pm
    End Date: June 2, 2010 @ 3:20 pm
     
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  8. Fat Viking

    Fat Viking

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    "There is one HBV and ME/CFS case in the USA that has gone to court but I'm not sure of the current status of this claim"

    The person won their claim
    https://therefusers.com/hepatitis-b-vaccine-caused-chronic-fatigue-syndrome-us-court/

    If you want full case report, I have attached it on this post
     

    Attached Files:

  9. charles shepherd

    charles shepherd Senior Member

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    Yes, that was back in 2013

    But it didn't end there….

    From a Bloomberg report dated 18 March 2015:

    https://www.bloomberg.com/news/arti...s-tough-standards-may-face-supreme-court-test

    Key points:

    The case the Supreme Court will this week consider taking was filed by the parents of Ilya Dobrydnev, who had a hepatitis B vaccination in 2001, when he was 10. He had a fever, swollen lymph nodes, inner ear inflammation and eventually debilitating memory loss. Now 23, he’s disabled by chronic fatigue syndrome.

    In 2004, his lawyer petitioned the National Vaccine Injury Compensation Program.

    The vaccine court -- which consists of special masters at the U.S. Court of Federal Claims -- in 2013 granted his parents $1 million and annual payments to cover the cost of his care.

    Victim-Friendly Standard

    The U.S. Justice Department challenged the decision the next year, saying there wasn’t sufficient evidence of cause to support such an award, and a federal appeals court overturned it.

    The Dobrydnevs’ Supreme Court petition claims the government set too high a bar and asks the justices to order the vaccine court to adhere to the more victim-friendly standard their lawyer contends was envisioned by Congress.

    “I happen to think vaccines are extremely important for public health,” said their lawyer, Mark Friedlander of McLean, Virginia. “But if something goes wrong, people think the government’s going to be there for them. They’re not.”

    Nicole Navas, a Justice Department spokeswoman, declined to comment on the case.

    The Supreme Court is scheduled to consider whether to take it on Friday.

    CS comment:

    Anyone from the US know what happened in the Supreme Court?
     
    Fat Viking likes this.
  10. Fat Viking

    Fat Viking

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    @Hip Do you know what happened in the Supreme Court?
     
  11. Fat Viking

    Fat Viking

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    I think I found it, he lost the claim, is that what the below means? I have given the link to it as well

    "The Court of Federal Claims erred by vacating the special master's findings under Althen factor 2. Because these findings demonstrate that petitioners have not met their burden under this factor, the final judgment of the Court of Federal Claims in favor of petitioners is reversed."
    https://casetext.com/case/dobrydnev-v-secy-of-health-human-servs
     

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