The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

EXCELLENT article on ME in the UK Daily Mail Today

Discussion in 'General ME/CFS News' started by Wildcat, May 8, 2012.

  1. Wildcat


    EXCELLENT article on ME in the Daily Mail Today:

    Only one or two factual glitches, in an otherwise stunning piece of journalism Oh Boy - Do we need reporting like this - Yes we do!

    All in the mind? Why critics are wrong to deny the existence of chronic fatigue
    By Sonia Poulton

    This week is Myalgic Encephalomyelitis Awareness Week or, as it's more accessibly referred to these days: M.E. That may not mean a great deal to you. Certainly, it didn't to me.

    Oh wait, yes it did.

    Based on no personal knowledge whatsoever - fortunately neither I or my loved ones have M.E. - my judgement was gleaned from how the world has portrayed the illness.

    Many sufferers have found themselves abandoned by health professionals, struck off of registers and even rejected by their own families

    Like millions of others, I have seen M.E. through the eyes of the medical establishment, the Government and the Media.

    The picture has not been good.

    Here is what I have previously understood about M.E. and those who have it.

    M.E. sufferers are workshy malingerers. They whine, constantly, about feeling tired. They are annoying sympathy seekers.
    Damn it. We're all tired. Especially those fools like me who work all hours God Sends (and even some he doesn't) to support the type of people who say they are too tired to work.
    Oh, and mostly, importantly, M.E. is 'all in the head' and can be overcome with a bit more determination and a little less of the 'poor me' attitude.

    That, generally, is what I thought about M.E.

    Until, that is, a reader sent me a DVD of a British-made film about the illness titled 'Voices From The Shadows'.

    I receive dozens of clips and films each month, and I try and see as many as I humanly can, but there was something about 'Voices...' that stopped me in my tracks.

    One of the reasons the film had such an impact is because it challenged my deep-seated preconceptions about M.E.

    Through 'Voices...' - and the subsequent research I have conducted - I have come to realise that what I thought I knew about the illness was a fallacy but, more importantly than that, was actually detrimental to those affected.

    So, as a naturally curious individual (I'm not a journalist by mistake) I began to question why I had been furnished with one version of events - and inaccurate ones at that.

    The more I began to delve into the subject the more curious it all became.

    Like for example, why are records pertaining to ME locked away in our national archives in Kew for 75 years? The normal period would be 30 years.

    75 years, the period generally used for documents of extreme public sensitivity and national security, is excessive.
    The reason given, that of data protection, is a nonsense as it is perfectly acceptable, and easy, to omit names on official documents. The excuse, supplied in Parliamentary questions by the Department of Work and Pensions, didn't wash with me.

    Why, I thought, were they making such an exception?

    It got me thinking about what information the files actually do contain. And, seeing as the topic of M.E. is still beset with misunderstanding, we could all benefit from some enlightenment on the subject.

    So, to this end - and seeing as it M.E. Awareness Week - here is my personal guide to shattering the myths and blatantly-pedalled untruths about M.E.

    Myth No. 1: ME is a mental illness

    Not so. It is a neurological one. It is not a case of 'mind over matter' despite many GP's and health professionals still thinking it is. Psychiatrists have bagged it as 'their thing' and the General Medical Council has been somewhat remiss in suporting it as a physical condition.

    I spoke with one ME sufferer, who asked to remain anonymous for fear of upsetting the medical professionals who are currently treating her. She said a new GP at her practice had suggested she take up meditation to help her combat her decades-old condition.

    Thankfully there are some doctors, few and far between admittedly, who really understand the physical nature of M.E.
    M.E. is not a case of 'mind over matter' despite many GP's and health professionals still thinking it is
    Dr. Speight, a medical advisor for a number of M.E. charities does. Commenting on the wide-ranging debilitation of the illness, he has said:
    'The condition itself covers a wide spectrum of severity but even the mildest cases deserve diagnosis and recognition because if they are given the wrong advice or don't handle themselves correctly they can become worse.
    'At the more severe end of the spectrum there's a minority of patients who are truly in a pitiable state...some of them in hospitals, some of them at home...and this end of the spectrum is really one of the most powerful proofs to me of what a real condition this is and how it cannot be explained away by psychiatric reasons.'

    M.E. sufferers are subject to a battery of controversial fit-to-work assessments
    Sadly, there are still many health professionals who buy into the notion that M.E. is a psychological disorder and should be treated as a form of insanity.

    In Denmark, only last week, The Danish Board of Health sought to remove a 23-year old woman, Karina, from her family home on the grounds of mental illness despite the fact that what she really has is M.E.
    Karina, bed-bound, light and sound sensitive and too weak to walk is considered to be insane, rather than physically sick, and her family has been repeatedly told by Danish doctors that the diagnosis of M.E. is not recognised.

    Myth 2: ME is just extreme tiredness, right?

    Wrong. Despite falling under the Chronic Fatigue Syndrome category - as does Fibromylgia which has its own Awareness Day next week - it is entirely wrong to assume that M.E. is merely about lack of energy.
    This confusion arose over the past 20-odd years and is due to the condition being re-classified as a Fatigue Syndrome.

    The result of this has been to trivialise the illness which has served as fodder for ill-informed public commentators who have used M.E. and Fibromylgia to talk about 'scroungers' in the benefits system who are 'too lazy' to get out of bed.

    For those who know about the illness, this type of commentary is viewed as dangerous rhetoric that deserves to be classified as a form of hate crime.

    Myth No. 3: M.E. is just like a bad flu
    Oh, if only. M.E. is a complex, chronic, multi-system illness that affect the body in similar ways to Multiple Scelerosis. In addition, inflammation of the neurological system can lead to heart disease, extreme muscle pain and other debilitating and life-threatening conditions.

    As one doctor put it, comparing M.E. to an illness like flu is like comparing Emphysema to a chest infection. It seriously undermines the truth extent of M.E.

    Myth No. 4: M.E. sufferers should just 'pull themselves together'

    Many sufferers have found themselves abandoned by health professionals, struck off of registers and even rejected by their own families when they have failed to respond to 'tough love'.

    Too many people assume that M.E. can be overcome with the right mental attitude. This consequently leaves M.E. sufferers even more vulnerable to issues like depression as they are further isolated.
    M.E. is not a case of the mind being able to heal itself with determination.
    M.E. breaks the body down and that also includes the brain.

    Myth No. 5: Only adults have M.E.
    Children have M.E. and their childhoods are destroyed as a consequence.

    Margaret Rumney of Allendale, Northumberland.watched as her 11-year-old daughter, Emma, was reduced to a shell of her former self when she was struck down with M.E. nine years ago.
    "Since then it has been a continual rollercoaster of emotions and has been one fight after the other," says Margaret. "It is very hard for my daughter being ill, she is virtually housebound, often reliant on a wheelchair, and to have to cope with disbelief and ridicule on top of this makes this illness even harder to bear.
    "Our experience of my daughter's school was an awful one. When my daughter was receiving home tuition organised officially by the Education Welfare Officer we were threatened by one professional that if my daughter didn't return to school that it would be classed as a psychological issue and social services would get involved."

    It is a misconception that children are in some way immune to M.E. It often begins following a bout of illness such as measles

    Threats and intimidation of this nature at the hands of the authorities are a constant feature of those in the M.E. community, and particularly those caring for children with the illness.

    Naturally, this pressure merely adds to the overall anxiety that sufferers are already experiencing. Education is key. Bullying is not.

    Myth No. 6 - You can 'catch' M.E.

    Absurd. It is no more infectious than a broken leg is. M.E. appears to follow various viral infections, including meningitis, although the true cause is still a hotly debated topic among professionals.

    Myth No. 7: Real M.E. sufferers are few and far between
    There are currently 250,000 recognised cases of ME in the UK. That's 1 in 250 so that's hardly an insignificant number, is it?

    Myth No. 8: Only severe cases of M.E. are worth acknowledging

    Terrible misconception. M.E. ruins people's lives even if the patient is not entirely bedbound.

    The media tend to concentrate on the worst case scenarios but this does not help the full situation as it leaves others, who are still able to move at times, with the stigmatisation of 'not being ill enough'.
    Claire Taylor-Jones, a mother of one from Rhyl in North Wales, has been unable to pursue her ambition of becoming a solicitor after she was diagnosed with M.E.
    Pull yourself together: Too many people assume that M.E. can be overcome with the right mental attitude

    In common with other sufferers, Claire has good days and bad days but she is not consistently well enough to pursue her goals and she is left in a type of limbo land. Her plans are on hold.

    Myth No. 9: Children with M.E. have neglectful parents

    There's the notion that children with M.E. are actually victims of mothers who have Munchausens by Proxy the illness where parents act as if the child is sick to further their own need for attention.

    This is a particularly dangerous belief system as it leaves the true M.E. sufferer without sufficient support and diagnosis and the carer is treated as the problem.

    Myth No. 10: Physical exercise will benefit M.E. sufferers
    Absolutely not true. Worse, still, enforced 'graded exercise' can escalate the condition to dangerous and irreparable levels for the patient.

    During the research of this subject, I have watched footage of hospital physiotherapists literally bullying M.E. patients to stand and walk. It is pitiful to witness.

    The physios say things like 'Come on, you can do it. You just have to put your mind to it' and, at worst, 'You're not trying hard enough.'

    Julie-Anne Pickles, who has had M.E. for the past seven years has experienced a serious deterioration in her condition as a consequence of wrong diagnosis and ineffective medical response. She is now 90 per cent bedbound and has been diagnosed with depression, diabetes and Angina.
    She told me:
    "Cardiology phoned me with an appointment the other day and they told me to wear trainers because they want me running on a treadmill while on an ECG! I said: 'You do know I have M.E.?' They said they did but not to worry as I won't be running for more than five minutes! Running? I crawled on my hands and knees to the loo this morning!"
    This idea among some of the medical professional that enforced exercise will help the condition of a M.E. belongs to a darker time in our history. A period when we thought that autistic children were a result of being born to cold and detached women or 'refrigerator mums' as they were heinously and immorally labelled.

    Myth No. 11 - M.E. is not life-threatening

    It is, although the true mortality rate of M.E. is mired in great confusion.
    Recently, Labour MP George Howarth asked Paul Burstow, Minister of State for Care Services, to supply details of deaths to arise from M.E. Mr. Burstow replied that 'this information is not available and is not collected centrally'.

    As with so many issues regarding our sick and disabled, the Coalition had this wrong, too.
    According to figures obtained from the Office of National Statistics, there have been five deaths listed as the cause of M.E. in recent years.

    For campaigners this is nothing less than a fudge of the true scale.

    Figures are easy to massage with M.E. because it triggers so many other illnesses, such as heart disease. Given that many health professional still deny that M.E. is a physical condition, they are unable to list it as a cause of death even if it is.

    Myth No. 12: M.E. is an excuse not to work

    Despite recognition from the World Health Organisation in 1969 that M.E. is a neurological disorder, many Governments - including our present Coalition - have chosen to ignore this.

    Consequently, M.E. sufferers are subject to a battery of controversial fit-to-work assessments. The anxiety and physical exertion this requires generally worsens the condition.

    When the M.E. sufferer is unable to work, because of their illness, they are removed from disability benefit and are plunged into poverty.

    So, for M.E. Awareness Week, let us be clear. M.E. is comparable to AIDS and cancer and all the other vicious and uncompromising diseases that savage the body and, in some extreme cases, kill it completely.

    The fact that it is still so widely misunderstood is a modern day travesty that must be addressed without further delay. Or is it convenient that we still view M.E. as being 'all in the mind'?

    I believe that we, as a nation, deserve to know the truth. Not only for those still battling the disease, but for those poor souls who have already been lost to it.

    * For further details on Voices from the Shadows:

    Read more:

    Googsta, L'engle, taniaaust1 and 2 others like this.
  2. mobyjoby


    It had a much better title too when it first came out. guess someone decided to change it!!
    "M.E. is comparable to AIDS, so why do so many people still deny it exists?"
    L'engle, hixxy and Wildcat like this.
  3. Wildcat


  4. Enid

    Enid Senior Member

    Brilliant ! - thanks Wildcat - the best and only real piece of journalism in all my 12 years.
    Glynis Steele and Wildcat like this.
  5. Calathea

    Calathea Senior Member

    Good point, the new title is terrible - the whole point of the article is that this isn't about "chronic fatigue"! Generally excellent article. I am attempting to comment but it keeps telling me that I have exceeded the word limit, even though I haven't.
    *GG*, L'engle and Wildcat like this.
  6. Ember

    Ember Senior Member

    This article is a fine testimony to the effectiveness of Voices in the Shadows: I receive dozens of clips and films each month, and I try and see as many as I humanly can, but there was something about 'Voices...' that stopped me in my tracks.

    Let's hope this is just the beginning.:thumbsup:
    SickOfSickness likes this.
  7. justy

    justy Donate Advocate Demonstrate

    Wow great article! - yes title terrible and a few innacuracies, but very very good awareness raising for us. (cant believ im saying that about the daily mail!)
    L'engle and Wildcat like this.
  8. Min

    Min Guest

    superb, but alas only on line and not in the printed edition
    Wildcat likes this.
  9. Esther12

    Esther12 Senior Member

    The Daily Mail has lots of good bits on-line... but never anything in the print version. The website is run in a very different way to the paper.
    Wildcat likes this.
  10. Merry

    Merry Senior Member

    Columbus, Ohio, USA
    This article made my day. Thanks, Wildcat. Thanks also to Sonia Poulton and to the person who sent her Voices from the Shadows.
  11. snowathlete


    if we contact them with praise about the article, who knows, maybe they will put in the paper edition.
  12. Kate_UK

    Kate_UK Senior Member

    This is really really great - I just wish it also mentioned the Invest in ME conference on 1st June so that people knew where to go for more information.
    Well done to the Voices from the Shadows team!
    L'engle, froufox and Wildcat like this.
  13. allyb

    allyb Senior Member

    Sadly I don think it will ever make it into the Printed paper edition because it exposes the truth about ME.:(

    However there was also an extensive piece that did make it into the printed edition about Orthostatic Intolerance by Professor Julia Newton at Newcastle University Hospital.

    Why poor blood flow could be giving you funny turns

    My thoughts are that this got to print because it is seen as a new physical conditioned and it hasnt been picked up and filtered through the weasel propaganda mangle yet.

    Infact it almost seems like the media hasnt made the connection that..

    Julias team published research in January titled Chronic fatigue syndrome and impaired peripheral pulse characteristics on orthostasisa new potential diagnostic biomarker

    Also her and her team have secured funding from the Medical Research Council.

    Principal investigator: Professor Julia Newton, Newcastle University. Title: Understanding the pathogenesis of autonomic dysfunction in chronic fatigue syndrome and its relationship with cognitive impairment.
    Starts: 1 June 2012. Due to finish: 31 May 2015. Amount awarded: 454,573.48

    Finally I love this clip where Professor Newton professes the physical anormalities of ME

    so we kind of made it into the print edition, even if it was inadvertently .;)

    Googsta and L'engle like this.
  14. Sean

    Sean Senior Member

    Absolutely. A few high profile prosecutions would be very welcome. Time for some proper accountability.
    Wildcat likes this.
  15. allyb

    allyb Senior Member

    I agree Sean, wholeheartedly but that DVD needs (& deserves) to make national TV so that ME can come out from the shadows and the abuse can be exposed, without exposure justice is unlikely.
  16. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    Great article :)

    but she needs to be made aware of the historic outbreaks and hence how it is likely it is transmissable.

    Ellen should be sent that DVD too to help correct her naive view of this illness too. It would be great if some kind of fund could be set up.. to help pay for these DVDS, to then use them to get them out to media people who have spoken on ME with obviously just a naive view.

    It would be a great way to educate media every time whenever we see false views in play (most media people arent nasty people.. just naive).

    Thank you to the ones who made this.
    Wildcat likes this.
  17. elbosque


    Thanks for sharing the article. I emailed it to my wife and kids for them to read at their leisure and I put it on my Facebook page for my friends. Regrettably, my kids understand it better than my wife. I think she is a bit in denial even though I have been sick since I came back from Timor and Indonesia in March of 2010.
    *GG*, Wildcat and ukxmrv like this.
  18. PhoenixDown

    PhoenixDown Senior Member

    This is just going to ring the wrong kind of alarm bells and will push away most readers from wanting to believe. Mentioning it does more harm than good.

    Needed to have elaborated on this, you're not catching it directly a such, and even if you do it doesn't represent all of the patient group (the 250,000 who have CFS or ME or CFS/ME). May be some people catch a virus but not necessarily all of us.


    There was no mention of wastbasket diagnoses, no debate over needing real empirical data to define psychological illnesses (not exactly the average Daily Mail reader's forte I suppose), no mention of irresponsible GP's, no mention of GP's withholding testing to diagnoses an illness of exclusion, no mention of promising drugs and their legalities, no mention of tests that exist (which we don't have access to in clinical practice) that prove what we're saying, no mention of perverted diagnostic criteria and how goal posts are moved to distort the facts.

    Oh and it referred to ME as all one illness. But hey, the authors probably know most of this but go with what ever generates more controversy and outrage instead.
  19. Esther12

    Esther12 Senior Member

    I don't know. This is not something I know much about, but I'm interested to know about and get access to those files. Also, people involved with politics/media seem to tend to be much more suspicious of government secrecy than most others.
  20. PhoenixDown

    PhoenixDown Senior Member

    Well I'd like to know too but I think a lot more could be achieved by informing the general public how psychiatric diagnosis are scientificly fraudulent, by making documentaries showing real patients getting tests indicating abnormal NK Cells, with real experts explaining what the results mean, patients getting f(MRI) scans showing the extraordinary amount of pain we're in after small activity, and again an expert discussing the results, with follow up scans showing how even smaller activity it takes it induce the same level of pain the next time (indicating worsening).

    The chances of getting the government to budge on those documents are minuscule, but the media may well be interested in documentaries.

    I know for a fact that GP's won't exclude everything they can, highlighting this will be most beneficial.

See more popular forum discussions.

Share This Page