1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Leptin
Andrew Gladman reflects upon the recent IACFS/ME conference and the buzz surrounding a small molecule, leptin.
Discuss the article on the Forums.

ME awareness week UK news articles .

Discussion in 'General ME/CFS News' started by pollycbr125, May 11, 2010.

  1. Adam

    Adam *****

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    I suspect the journalist is a reguar visitor to PR. Wonder if she ought to credit Phoenix Rising in some way? Well, at least she did not do an Adam Bouton and allow personal prejudice to interfere with her journalism, or make reference to the Gee-Hadists remark! On the other hand, as always, the Guardian, manages to make us look bad, bad, sad, mad.
  2. Marco

    Marco Old blackguard

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    So the WPI findings rocked the ME community and the scientific world. They certainly didn't rock the Guinard who only reported the negative European studies ... and if WPI have now retreated behind the barricades because of the failed studies perhaps she could explain why GlaxoSmithKline and CDC are running with XMRV?

    This article is presented as seeking to be objective (some people with CFS do experience difficulties etc etc). In reality its the usual Guinard sMEar job.

    The trouble with ME? Trash journalism.
  3. garcia

    garcia Aristocrat Extraordinaire

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  4. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Adam, the journalist is the Guardian's Health Editor, Sarah Boseley, who's been covering ME for years.
    It was freelance Guardian journalist, Martin Robbins, who came onto PR a few weeks ago.

    Some earlier Boseley pieces, from 2001, in which she claimed:

    “Prof Wessely has quit the field – and is not the only professional to have ceased involvement with CFS.”

    Except he hasn't.

    “There are many who have found themselves vilified and…have joined the ranks of others who have been abused and intimidated for producing research unpopular to powerful special interests.”

    The following week, Ms Boseley had written:

    “Simon Wessely, of the Department of Psychological Medicine at Guy’s, King’s and St Thomas’s School of Medicine in London, is a former key figure in the study of ME/CFS who has felt the heat and largely backed out of the kitchen.”

    Nine years later, he hasn't quit the field and he's still churning out papers and these same tired, old, unsubstantiated claims get hawked by journalists year after year and now we have Spencer and Shepherd doing it too, and I am so angry with Shepherd's MO, today, that I feel like walking away.

    "The trouble with ME? Trash journalism."

    The trouble with ME? Ineffectual campaigning patient organisations that seek to act as apologists for the MRC's failure to fund quality research studies.

    As I've already said, since when has MRC research funding been allocated on the basis of the MRC's perceptions of the patient communities who would benefit from research proposals?

    And if the money is there, the researchers will follow.

    PD White, Chalder, Moss-Morris, Wearden, Creed, Wessely, Cleare, Sharpe, Powell - they've all been working in the field of CFS and ME research for years, nothing has stopped them from keeping their snouts in the trough.


    Do read these Adam, if you haven't already seen them - they are not long pieces:

    Storm brews over ‘all in mind’ theory of ME, Guardian 20 September 2001
    http://www.guardian.co.uk/uk_news/story/0,3604,554693,00.html

    A very modern epidemic, Guardian 27 September 2001
    http://education.guardian.co.uk/higher/medicalscience/story/0,,559001,00.html
  5. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    And finally...

    Just in...

    Dear Ms Chapman

    I am e-mailing as promised to let you know that the note and the presentations relating to the research workshop are now available on our website.

    The link to the web page is as follows: http://www.mrc.ac.uk/Ourresearch/ResearchInitiatives/CFSME/index.htm, and the note can be found at the following link: http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC006813.

    As agreed I will also let you know once the note of the expert group meeting held in March is also published on the website. I hope you find the note to be helpful.

    Sincerely

    Rosa Parker
    Corporate Information and Policy

  6. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Links for MRC November 09 CFS/ME Research Workshop

    The link for the web MRC page is:

    http://www.mrc.ac.uk/Ourresearch/ResearchInitiatives/CFSME/index.htm

    The note can be found at:

    http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC006813


    Agenda:
    http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC006511

    List of participants of the MRC CFS/ME Research Workshop
    http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC006510

    Note of the MRC CFS/ME Research Workshop 19-20 November 2009
    http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC006813

    (including copy of the presentations from the meeting at annex 1)

    MRC CFS/ME Research Workshop
    Issued:14 May 2010Primary audience:General publicDocument Summary

    19 and 20 November 2009, Heythrop Park Hotel, Oxfordshire process and timetable.

    http://www.mrc.ac.uk/consumption/id...dID=25991&dDocName=MRC006813&allowInterrupt=1

    (3MB PDF) Includes Presentation Slides

    (Too large to upload here, so please grab from site. I may convert to text at some point in the future)

    Papers circulated prior to the meeting:

    http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC006509

    CFS/ME Literature review Jan 2004 – June 2009
    Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome: Lombardi VC et al. Science. 2009 326:585-9

    Suzy Chapman
  7. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Extract Page 1 Note of MRC CFS/ME Research Workshop, November 2009

    1.3 Professor Holgate referred to the recent interest in the publication of research linking the retrovirus XMRV to CFS/ME, before going on to summarise the key challenges in the field:

    [...]

    • The need to consider both physiological and psychological mechanisms in developing therapeutic approaches.


    Is there any point reading any more of this document?
  8. Dolphin

    Dolphin Senior Member

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  9. Dolphin

    Dolphin Senior Member

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    (Not good) South Wales Echo: Article on tiredness which talks about CFS also

    One can comment on this online (or even write a letter:
    wosmail@mediawales.co.uk wosmail @ mediawales.co.uk with Letters in Subject
    line)

    ================

  10. Dolphin

    Dolphin Senior Member

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    "Keith's call for ME help" (Burntwood Post)

    http://www.afme.org.uk/news.asp?newsid=840
    Don't ignore M.E.
    Keith Bradbury, a member of The 25% Group, calls for more recognition and research into M.E.
    Burntwood Post, p.16
    13/05/10

    ----------

    http://tinyurl.com/3ylkkep i.e.
    http://www.chasepost.net/news-in-ca...5/14/keith-s-call-for-me-help-93633-26446304/

  11. Dolphin

    Dolphin Senior Member

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    Piece on t5m.com

    http://www.afme.org.uk/news.asp?newsid=840
    More awareness
    Commenting on how the tragic death of Lynn Gilderdale, who had M.E., and the trial of her mother Kay, has brought M.E. to wider attention.
    t5m.com, web
    13/05/10
    http://thecollectivereview.com/penelope-friday/mecfids-awareness-day.html
    -----------

  12. bananaman

    bananaman

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    From: Professor Malcom Hooper
    To: letters@guardian.co.uk

    The Editor

    The growing understanding of ME shown in the recent article (The trouble
    with ME 14/05/10) by your medical correspondent, Sarah Boseley, is most
    welcome. However, there are a number of significant errors and omissions in
    the article.

    ME is Myalgic Encephalomyelitis, which signifies muscle pain with
    inflammation of the brain and spinal cord (inflammation has been shown to
    occur, in three recent UK post-mortems) and the disorder has been classified
    by the WHO as a neurological disorder since 1969. The correct terminology is
    NOT myalgic encephalopathy, which is not classified and is a much less
    specific clinical term. The alternative term Chronic Fatigue Syndrome, CFS,
    was introduced in 1988. Its use is restricted by the WHO to ICD-10 G93.3 and
    excluded from use elsewhere, particularly in somatoform, fatigue, chronic
    fatigue, and fatigue syndromes which are classified at F48.0. The
    similarities in these words used in F48.0 and in G93.3 have led to much
    confusion, and some deception, by those seeking to reclassify ME as a
    somatoform disorder.

    The identification of people with ME relies on accurate terminology and case
    definition which are essential for well designed research studies. The
    CDC-Fukuda 1994 definition has been shown to be non-specific, whilst the
    1991 Oxford definition developed and favoured by certain influential
    psychiatrists who work for the medical insurance industry, excludes
    neurological conditions. Studies with such heterogeneous cohorts of patients
    cannot provide any meaningful data for interpretation. The current Medical
    Research Council PACE Trial on "CFS/ME" is seriously flawed in this way
    since it uses the Oxford definition which embraces all states of "medically
    unexplained fatigue" but by definition excludes those with ME, a situation
    that defies logic.

    The 2003 Canadian Criteria were produced by very experienced clinicians who,
    between them have diagnosed and treated over 20,000 patients with ME. They
    provide comprehensive clinical signs associated with ME, from which any
    competent physician should be able to make a diagnosis with the use of
    appropriate investigative tests many of which are restricted or proscribed
    in the UK by NICE.

    Although the recent judicial review did find against the ME plaintiffs, the
    decision is the subject of a legal challenge due to the alleged failure of
    due legal process.

    The undeclared vested interest of doctors associated with insurance
    companies was critically exposed in the report by senior Parliamentarians
    chaired by Dr Ian Gibson which exposed the severe difficulties experienced
    by patients with ME when they seek benefits and support. This is not
    conspiracy theory or paranoia but a daily reality for many patients,
    families and carers.

    Over many years it has been demonstrated that numerous viruses are
    associated with ME, the most common being enteroviruses with herpes viruses
    (glandular fever etc) coming second.

    People do die from the illness (Jason et al. Health Care for Women
    International 2006:27:615-626). The tragic story of Sophia Mirza, who died
    aged 32 from ME, has been published, together with her medical records.
    These demonstrate the ideological commitment of some clinicians to the
    somatoform model of the illness and the ignorance and inhumanity of some
    members of the medical profession, including sectioning of a very sick woman
    and accusations, in this and other cases, of MSBP (Munschausen's syndrome by
    proxy) with parents having only limited access to their children or even
    banned from any contact.

    The offer of only behavioural modification and incremental aerobic exercise
    (CBT and GET, upon which the payment of benefits is contingent), which are
    management techniques and in no way curative, as allegedly effective
    treatments for people with a severe neurological disorder is unethical, and
    a betrayal of doctor's Hippocratic oath. Many surveys by ME charities,
    including the 25% ME Group for the Severely Affected that represents the
    most severely ill have shown that CBT has no lasting value and that GET is
    positively harmful. The most severely affected are almost totally excluded
    from any research studies since they are housebound or bedbound.

    The recent discovery in the US of the retrovirus, XMRV, in ME/CFS patients
    emphasises the urgent need for biomedical studies. The acclamation of the
    three subsequent studies that failed to find XMRV by those who subscribe to
    the behavioural model of ME (which did not attempt to replicate the US
    study) serve merely as vehicles to discredit any suggestion that ME/CFS is a
    serious organic disease.

    Following the demonstrated association of a retrovirus with ME/CFS, the
    Canadian and New Zealand governments have banned patients with ME from
    serving as blood donors. This accords with the current UK position that
    people with ME must refrain from donating blood.

    If Sarah Boseley attends the forthcoming Invest in ME conference on 24th May
    at 1, Birdcage Walk, Westminster, she will hear international experts
    addressing most of the above topics. She will be one of the few medical
    journalists who appear willing to listen and learn in order to understand
    more fully the complexities of the chronic multi-system illness that is ME.
    I look forward to meeting her there.

    Malcolm Hooper (Professor)
  13. Angela Kennedy

    Angela Kennedy *****

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    Suzy's comments on this thread and her analysis of the situation are so right.

    To be honest, I dread ME awareness week and the media stories. I dread a quote by the charities or other organisations. I dread first person stories where people recover by pole dancing, or plugs for the 'Chronic Fatigue' units. The reification of all the bullcrap, year after year after year. : (
  14. Min

    Min Senior Member

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    Oh good grief are the daft CFS clinics going to make us do pole dancing now?

    That's a great letter from Malcolm Hooper.

    Many thanks to Suzy.
  15. Angela Kennedy

    Angela Kennedy *****

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    Well one girl claimed she was cured by it in a newspaper - so there may well be a research grant for a trial on children before the year is out... (someone give me an emoticon for a rueful grin, please?)
  16. IamME

    IamME Too sick for an identity

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    Thank god for that excellent letter from Prof Hooper, as that was quite a slyly terrible piece of hackwork in the Gaurdian calculated to leave the reader with a taste that needs quickly washed away. Some googling on XMRV, a few soundbites either steered or offered on 'orrible sufferers with their conspiracy theory lunacy and "radicalised" terrorism driving away the masses of biomedical interest, and a big juicy bit of establishment PR. The only good thing about awareness day this year was it was overshadowed by a bigger farce in the election.
  17. shrewsbury

    shrewsbury member

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    Agree Prof Hooper's letter is excellent. I am still unclear as to whether the Gueardian published his response or if he has posted it on-line. Would be fantastic for it to be in the Guardian.
    -------------------------
    Not sure if this has been posted yet:

    Charles Shepherd to CO-CURE today

    Magazine article from the UK intended for ME Awareness Week:

    ME: What's the latest?


    Much of ME or chronic fatigue syndrome is a mystery in the medical world and some GPs still dont even recognise it as a condition. Our top expert brings us the newest facts.

    Mention ME or chronic fatigue syndrome (CFS) to a group of doctors and theyll probably disagree on everything from what it is, what to call it, what causes and triggers it and how to treat it. And although most GPs now acknowledge it exists, around a fifth still dismiss it as all in the mind. This is despite the fact the World Health Organisation has viewed it as a genuine, debilitating neurological condition for 20 years.
    Severe ME or CFS can totally destroy someones quality of life. For example, earlier this year, the court case of ex-nurse Kay Gilderdale hit the headlines. She admitted aiding and abetting the suicide of her daughter whod suffered from ME for 17 years, enduring constant pain and needing 24-hour care. Towards the end, she couldnt walk, talk or even drink.
    Although most ME/CFS patients will improve over a period of time only a small minority fully recover and return to previous health levels. Most will go through periods of relapse and remission.
    Some 240,000 people in the UK suffer from the condition which is now commonly known as ME/CFS. Patients dislike the term chronic fatigue syndrome as it fails to reflect the symptoms or the severity of the illness. Doctors prefer CFS because myalgic encephalomyelitis (ME) implies brain and spinal inflammation, which hasnt been proven either. ME/CFS is the compromise.

    Physically draining
    ME/CFS describes a whole host of symptoms that follow an infection such as chicken pox, flu or gastroenteritis. Weeks after the infection has gone, sufferers are often still totally physically exhausted like theyre operating at about 60 per cent of the real them. A simple walk to the local shops can leave them flat out: they might struggle to find the right words, be unable to concentrate and suffer memory lapses too. They also feel fluey, have sore throats and muscle pain, can have problems with balance and may become intolerant to alcohol.
    This can go on for several years, or longer. Most people go through ups and downs, stabilise for a while, then relapse. But around a quarter, such as Kay Gilderdales daughter, are so severely affected that they become wheelchair bound, house bound and bed bound.
    Most people develop ME/CFS in their 20s, 30s or 40s and have had no particular health problems before. Its twice as common in women than men were not sure why, but we know that people affected severely with the condition are more likely to have a mother with ME/CFS. Maybe the genetic link explains this. Some people who are exposed to a viral infection are more likely to develop an illness and this susceptibility may be passed on
    Being under stress when youve got an infection may also trigger ME/CFS symptoms. Athletes have been known to get it when theyre under physical stress.
    Children can develop it too in fact, its one of the most common causes of long-term school absence among teenagers. However, they are more likely than adults to recover and return to a normal active life.

    Could a virus be the cause?
    This is still a matter of huge debate. US scientists have found a link between CFS/ME and a virus called XMRV which was discovered in 67 per cent of ME patients compared to under 4 per cent of the population. But a more recent British study couldnt replicate these results. If further research finds that this virus is causing the disease, we may start trials on anti-viral drugs and diagnostic tests.
    Despite this emerging evidence of a persisting virus, the current most popular explanation for ME/CFS is that the immune system fails to switch off after an infection. So someone gets an infection, their immune system swings into action and produces chemicals called cytokines that make anyone with normal flu feel awful. The idea is that when the infection has gone, the immune system keeps going, still making these cytokines.
    About three quarters of cases are straightforward to diagnose. A typical case is someone whos used to being well and wants to go back to work, but has been suffering post-viral symptoms for weeks or months. A doctor will carry out routine blood tests such as thyroid, kidney, and liver function tests. If the results come back okay and there are no red flag signs of another illness, such as coughing up blood or swollen joints, then a diagnosis of ME/CFS can be made. In some cases, patients might be referred to a specialist to rule out other conditions, such as multiple sclerosis.
    Early diagnosis offers the best hope of recovery only then can sufferers start managing symptoms. Of course, this depends on how long it takes for your doctor to make an accurate diagnosis some doctors may put symptoms down to post flu flop, encouraging you to just get on with things. This wont help your body is telling you to slow down.
    Symptoms can get worse by not accepting theres a problem when people go back to work and try to exercise their way out of it.

    Managing symptoms
    With no known cause, theres obviously no easy cure so its normally a matter of treating individual symptoms. Drugs are often prescribed to treat muscle pain, sleep disturbance or depression. If sleep is a problem, also make sure you go to bed and wake up at the same time every day and relax rather than sleep in the day.
    On top of the physical symptoms, it can be incredibly stressful living with ME/CFS dealing with doctors who dont believe you, fighting for benefits, having a difficult employer or unsympathetic family, for instance. A counsellor can help you work through these issues your GP can refer you to one, or visit the ME Association website, below.
    The key to managing ME/CFS, however, is getting the correct balance between activity and rest. This approach, known as pacing, has been found the most helpful life change for many ME/CFS sufferers. This idea is that you split the day into periods of rest, mental activity and physical activity. Gradually over time you build up the mental and physical activity. Its important to get the balance right staying in bed all day or exercising hard may slow recovery or trigger relapse.
    As soon as you get a diagnosis, pay particular attention to your diet a healthy, balanced diet is important to keep up energy levels. Its common for ME/CFS sufferers to get irritable bowel syndrome (IBS) and they can become intolerant to certain foods. But before starting exclusion diets, talk to your GP.
    Natural therapies can be effective for many people.

    For more information and support, log on to www.meassociation.org.uk and Action for MEs website www.afme.org.uk. You could also try the ME Connect Helpline on 0844 576 5326.

    Natural helpers
    Many ME/CFS sufferers turn to alternative medicine because conventional medicine hasnt got the answers. Alternative therapies can help relieve symptoms but beware of practitioners promising a miracle cure. There isnt one! For pain relief, some people find acupuncture or TENS machines helpful. Theres also evidence that supplements might be helpful:
    -Carnitine may help reduce fatigue.
    - St Johns Wort may help mild to moderate depression.
    -Fish oil/EPO has been shown to help brain function in studies.
    -Findings in the Journal of Psychosomatic Research found that homeopathy may help relieve fatigue in ME/CFS patients. Some homeopaths are medically qualified doctors too, so will know about when to use homeopathic medicine alone and when to use them with conventional medicines.

    Chocolate therapy
    It seems too good to be true but a study at Hull and York Medical School found that ME sufferers were less tired after eating a small amount of dark chocolate (45g) every day. The idea is that polyphenols in chocolate boost serotonin levels in the brain, which help regulate mood and sleep.

    The expert: Dr. Charles Shepherd

    Dr. Charles Shepherd works in private practice and is medical adviser to the ME Association. He has lived with ME for 30 years.

    Compiled: Karen Williamson
  18. Adam

    Adam *****

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    I guess not Suzy. ;)
  19. Adam

    Adam *****

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    Damn it, Dr. Sheppard, tell me who went and stole my 50%?

    And why aren't there shops within 50 yards off where I live so I can go buy my 45 grams of Cadbury's so I could be well again?
  20. garcia

    garcia Aristocrat Extraordinaire

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    I think with that kind of advice Shepherd should go back to looking after sheep!

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