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Second person in the UK to have ME recorded on their death certificate

Discussion in 'General ME/CFS News' started by negativelift, Jul 27, 2018.

  1. negativelift



    The family of only the second person in the UK to have ME recorded on their death certificate say they feel "vindicated" by the ruling.

    Merryn Crofts from Rochdale died in May last year, 10 days after her 21st birthday.

    Her mother Clare Norton told BBC Radio 5 live's Anna Foster that Merryn had started to doubt herself after being misdiagnosed by doctors.

    She said hearing the coroner's verdict "meant everything".

    "It's vindication for Merryn because it would have meant so much to her. She was scared of doctors and of telling people she had ME."

    Clare described her daughter as a "live wire" growing up, with a packed social life and a love of drama, but said she "lost her bounce" when she started to develop symptoms of ME (myalgic encephalomyelitis), also known chronic fatigue syndrome (CFS), at the age of 15.

    “She was like a wind-up toy - when you see the Duracell bunny and the batteries are going.

    "If you went for a walk or went shopping, you'd see her deteriorate. Then one day she was at school and she couldn't move her legs, she couldn't stand up."

    'What if it is in my head?'

    Doctors initially suggested that Merryn was having panic attacks, and her family were later told that she may have conversion disorder, a mental condition formerly known as hysteria.

    "I knew it wasn't. I work with people who have panic attacks and I can talk them down," said Clare.

    "Merryn was starting to think 'What if it is in my head?' It made her doubt herself, which is awful."

    Eventually a private doctor diagnosed Merryn with ME and she began to receive treatment on the NHS.

    Within six months of falling ill she was using a wheelchair, and within a year she was housebound.

    “She used to say, 'Exhaustion, tiredness, fatigue, I don't care about that, I can cope with that,'" said Clare.

    "But she was in a dark room because she couldn't stand the light. She couldn't be touched because her skin was so sensitive. She was in constant pain, different types of pain."

    'Like being trapped in your own body'

    Merryn's sister Amy described the final three years of her life as "horrendous", adding: "Her hospice doctor likened it to having a heart attack in your stomach."

    "The best advice we got was from a doctor who said, 'Whatever you feel you can do, do 50% of that, so you always have energy in reserve.' But in those final years Merryn had no energy in reserve, she was always borrowing from the following day. She never pitied herself, she never wallowed."

    Merryn blogged about her condition, writing in 2015: "Having severe ME is like being trapped in your own body every single day. There is no rest, you are bed-bound all day every day.

    "It snatches the most simple things away from you like being able to wash yourself, even in bed. Being cared for in every way possible. In terrible pain, from everything."
    StarChild56, RobR, L'engle and 11 others like this.
  2. Shoshana

    Shoshana Northern USA

    Northern USA
    Thank you for posting this, @RobR83

    I feel sadness for Merryn, and for her mother, yet it is helpful to read about this, and I will remember Merryn, now,

    Plus I will appreciate her mother's efforts to share with others.
    StarChild56, L'engle, Mel9 and 2 others like this.
  3. RWP (Rest without Peace)

    RWP (Rest without Peace) Senior Member

    It is so sad and so horrible that this article has to be considered "good news" for anyone. Words can't express my disdain for any profession (the medical one) that gives itself godlike powers of "knowledge" such that it can judge what's happening inside another person without any evidence.

    StarChild56, L'engle, Judee and 5 others like this.
  4. Wolfcub

    Wolfcub Senior Member

    SW UK
    Thank you for your post @RobR83 ....That poor girl, so young and suffered so much. Blessings to her Soul.
  5. Research 1st

    Research 1st Severe ME, POTS & MCAS.

    Lets see why she died:

    If we know why ME patients are targeted medico - politically (intentional and historical fact of ME re-categorised as CFS/ME by the UK Department of Health) we can prevent it happening in the future by legally challenging the status quo concept of doctors denying ME, and recklessly treating ME by prescribing psych therapies in the false hope this will make ME go away in the mind of the 'believer'. Thankfully, the key people responsible for our neglect by the state (state health policy influencers) are on record, as stating ME is a belief, and not an organic disease,so they have set themselves up historically to be prosecuted at a later date for genocide. I say genocide as the British psych lobby have exported their science fraud over the globe, all countries who recognise ME, only recognise it as CFS and via this ME abuse is guaranteed via CBT/GET/Antidepressant ruse.

    Point 1: Merryn had an incurable progressive form of ME and lived in the UK, not America. The UK is unfortunately, the most corrosive country when it comes to denial of ME, then others follow like Australia, Canada, Holland and then Belgium, Germany, Norway, Spain, France and so forth. In America, ME patients can obtain off label drugs, they may work, they may not. Treatment of ME in America (for those with money) is entirely experimental and a lottery. This is still better than guaranteed failure, which is what 'free' tax payer funded Psychiatry offers the British ME sufferer like Merryn.

    Fact 2: The UK's NICE Guidelines on CFS/ME warn against prescribing Immunological therapies such as antivirals and IVGG yet dangerously recommend psychiatric therapies as the exact opposite as the only evidence based treatment for CFS/ME. NB: The NICE guidelines 'evidence based treatments' are based on fraudulent scientific research as in the patient cohorts of therapies, F48.0 mental illness studies are accepted under the guise these are reported as 'CFS/ME' research papers to health agencies, and in addition those with organic signs of disease are excluded from UK biomedical ME research due to how CFS/ME is categorised as simply 'unexplained fatigue' and patients with explained reasons for Chronic Fatigue (what ME leads to) are not studied - ergo UK 'Biomedical ME Research'' does not feature patients with organic inflammatory ME, they cannot by design - see previous sentence. This means Patients like Merryn, were thus never and continue not to be, researched!

    Fact 3: Because they aren't researched, they become orphan patients. No one wants to help these patients because they fear consequence by the state by doing so. Example: Due to this miscategorization of her progressive ME as CFS/ME (treated as behavioural disorder), Merryn's doctors could not prescribe immunological therapies including Antiretrovirals (on an experimental basis) that may have helped her, as doctors will often be reported to the GMC in the UK by fellow snides within the medical profession should they try anything unorthodox, and by this, risk losing their license should they act like compassionate doctors helping patients who are ostensibly dying and not act upon the wishes of corporate Marxists who sneak on anyone trying anything that isn't based on the religious belief of Psychiatry (Psychiatry isn't Science based, but faith based religion that doesn't use a single objective test to confirm a diagnosis). CFS has no test to confirm the diagnosis or even a sign. ME has plenty of signs, these are ignored as it would then confirm ME is not F48.0 CFS, and thus all the fraudulent pro-psych CFS research would be irrelevant to ME sufferers - how it should be, but isn't politically.

    Yet, behind the state censors, privately funding ME patients often report, for example, IVGG can in some cases be useful. This comes to no surprise when you read online forums, where ME patients discover they have IGG subclass deficiency on testing (e.g. IgG3 deficency) or other forms of immunodeficiency. Of note, IgG subclasses are NOT tested for by the UK NHS when diagnosing or managing CFS/ME patients, so as with so many other tests, this immuno-defect is missed.

    Fact 3: UK's CFS researchers sold (and continue to sell) a fraudulent medical treatment to the NHS system for ME (they personally lobbied UK health agencies or allied agencies such as the Department of Work and Pensions (DWP) who pay out social security disability benefits - to call and treat ME, as CFS and the Department of Health (DOH) subsequently gave in to these demands by Psychiatry and re- categorised ME as 'CFS/ME' which CFS researchers then reduced further to F48.0 Chronic Fatigue, (which is a mental health disorder). Once 'ME' had become a mental disorder at a research level, it was easy to churn out 500+ trash papers claiming their 'therapy' works, because the patients it doesn't work on, don't have organic ME in the first place. Like taking candy from a baby.

    Fact 4: This subsequent fake news evidence of CBT/GET etc treating the mental disorder F48.0 Chronic Fatigue was scurrilously used by PACE researchers to influence government treatment to provide evidence that CFS is treatable and thus if this is a fact, then the organic disease ME doesn't exist, the insurance industry, and the media LOVED the PACE trial and the fans of the fradulent research congratulated themselves whole heartedly on a 'beautiful' study. On independent review, however, PACE was found to be useless and ineffective, not just for PWME (they weren't studied), but for people with a mental disorder like F48.0 Chronic Fatigue - they call ME or CFS/ME in research, in Parliament, and in the media. Merryn, thus didn't have a hope in hell to get better because....

    Fact 5: Merryn didn't have a mental disorder, but her only available treatment option due to the NHS copying psychiatric denial of ME of F48.0 Chronic Fatigue psych criteria CF - was mental in nature. What could possibly go wrong?

    Fact 6: The NHS back the fraud therapy of the British psychiatrists and wider CDC, yet this foolish decision consequently lead to her death as there is no biomedical treatment for progressive ME which she should have been given on an compassionate and experimental basis, but this was not possible and specific drugs for ME were never funded at a research level decades earlier which they should have been. Without research, patients cannot have treatments and without treatments ,the worst cases will die. Simple logic.

    If you sold a fraudulent treatment for HIV and patients who were given this fraudulent treatment also died in the same way, there would be a public outcry and criminal proceedings launched against the fraudster researchers who tricked the NHS and told the NHS that their therapy of CBT/GET/Antidepressants is evidence based, safe and effective for ME, because they claim ME is CFS, and ME doesn't even exist, ME is a belief. Well nice belief, because now she's dead due to their disbelief ME is real - ergo they are responsible for her death.

    Fact 7: She was killed by the State's neglect, by backing the wrong area of research. Fraud Science.

    This will go on and on, and is also discussed in the redacted MRC files on ME, deaths of patients are discussed. So they new DECADES ago, patients were dying, but backed the Psychiatrists anyway and funded them too. That was real clever.....not.

    Now for sure, like the child abuses cases in the UK involving doctors, the vast majority of the patients will be dead and the abusers will grow old and die:

    I still feel the Americans will find the cause within a decade, and then we are talking genocide once the agent that causes ME will be proven to be transformable to those genetically susceptible which is why the UK made sure to protect bone marrow, stems cells from pregnant female donors and blood.

    So they knew all along progressive severe ME was fatal, they just didn't want to admit it, as they caused it to spread. Same with vCJD and the haemophiliacs who developed AIDS from HIV infected blood. The UK NHS also killed patients from contaminated blood products with Hepatitis.

    She is sadly a victim, there have been many before her and will be many after until the people responsible are charged and jailed for fraud. It can happen, but the state cannot stop people who they award for their crimes.

    This is sadly part of living in a corrupt society, masquerading as open and democratic. Ultimately, a 21yr old dying of a progressive disease disgusts me, in that she had no treatment, because the bottom line is no one funds the research, because the patients are presumed mentally ill, based on cohorts of patients who don't even meet the criteria for the disease they don't have. Utterly, utterly corrupt and it was the CDC who started this, with their 'CFS' idea in 1988 - 30 years of intentional lies of ME as CFS, and Merryn paid the price of this.
    RobR, lauluce, Kenshin and 5 others like this.
  6. negativelift


    It’s a very sad story for sure and I can definitely relate to being made to doubt myself. I hope some good comes out of it.
    Mel9, RobR and panckage like this.
  7. lauluce

    lauluce as long as you manage to stay alive, there's hope

    there's something I don't understand... how did they concluded that her ME was what caused her kidney failure? what's the supposed mechanism behind such event? It would be very useful for researchers to know this things, I guess
  8. RobR


    Despite its severity, the illness is still not well understood.

    Poor girl what a tragic end to her short life.
    And this disease (or whatever it is) is still not being understood here in the U.K at least, and in many cases ignored.
    At times I think we are being euthanised by stealth because of the lack of acknowledgement that this thing exists.
    cigana, lauluce and SilverbladeTE like this.
  9. SilverbladeTE

    SilverbladeTE Senior Member

    Somewhere near Glasgow, Scotland

    As the old saw goes
    it has gone on too long, the same small group constantly involved, certain behaviours etc all add up to a deliberate campaign
    cigana, RobR and lauluce like this.

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