Friday, November 26, 2010


From noon to 3 p.m. on Monday, ME/CFS patients in the U.K. are staging a virtual and onsite protest to mark the 25th anniversary of London’s St. Bartholomew’s Hospital ME/CFS service.  The hospital itself, however, is 900 years old, having been founded in 1123 by a courtier in King Henry I’s court.  The hospital’s future seemed precarious 400 years later, when King Henry VIII—the king who beheaded or divorced four of his six wives—ordered the dissolution of the monasteries, thereby depriving the hospital of income, until King Henry VIII reendowed Barts shortly before his death, in 1546.

Many ME/CFS patients believe that the treatment they’ve received at Barts is more appropriate for medieval times than today.

Rosie O’Grady (not her real name) is one of them. The 43-year-old disabled lawyer hails from Ireland but lives in England with a severe case of ME/CFS. Before she became ill in 1996, she reminisces, “I rowed on the weekends on the Thames with a rowing club in Greenwich. I loved traveling and my friends. My life was very full.” 

All that changed 14 years ago when she became ill with a flu from which she has yet to recover.  She was an outpatient at Barts several times from 1997 to 2005. To get government benefits in the U.K., she explains, there’s “intense pressure to show you’re doing ‘treatment.’  If you had a private income, you would not go there.”

O’Grady says the doctors and rehab team at Barts wanted her to become as physically active as possible. “I was told by the physio there everyone could do 10 percent more activity every few weeks. They told me that any time I felt unwell [I should] go for a walk and the fresh air would wake me up.  I completely placed my trust in them,” she says, but like most patients with ME/CFS pushing herself only made her worse. “Some days my power to my fingers was so weak I could not pick up a coin,” she remembers. “I was desperate to get well and would have done anything they said.”
Her ME/CFS case was so severe that she moved into a YMCA where all food and services were provided.  “I could not even change the duvet on my bed,” she says.  “I was unable to make a cup of tea and stay awake to drink it.”  Today she is bedbound or in a wheelchair, unable to work or remain upright for more than few minutes at a time.  She believes that her time at Barts contributed to her ill health.  Her sojourns there left her physically weaker and “emotionally spun out from the lies and double speak.”

Frustrated by the care at Barts, O’Grady made an appointment with a rheumatologist at a different hospital, who prescribed anti-inflammatories to treat the pain in her back and neck, which proved helpful.  When she had given her Barts doctor the same list of rheumatologic symptoms, “he looked bored, said nothing and started cleaning his fingernails,” she recalls.  “Another doctor claimed they didn’t need to run many tests on ME/CFS patients because “they would know the results simply by looking at the patients.”
For more information on the protest:
For information on how to email or fax a virtual protest:


  1. Thank you for this reminder about the protest at St. Bart's, and also for giving the moving story of Rosie O'Grady. I am sure her story of at St. Bart's is just one of many. I hope everyone who can will participate in person or online.

    Patricia Carter
    XMRV+, 24 years ME

  2. These medics are off their rockers. Stupidity rules with them. Let's tell them what we think of that, and force a change. Thanks for covering this Mindy.

  3. It's the same disgusting approach over here in Belgium. To get government benefits the healt care pressures you to follow CBT & GET, otherwise you get into financial problems. The only thing they are allowed to prescribe is anti-depressants and sleepmedication. Physicians who actually took these patients seriously and prescribed them medications to boost the immuunsystem, got a fine of 635000 Euros. This way they set a good example for everybody else, because on top of that they can be suspenced.

  4. So many awful stories, it breaks my heart. I know of a 30 yr old who rarely leaves home as she is in too much pain with FM. I've had no luck contacting her, but who knows what she had been told and what her real diagnosis is. Medieval is the right word.

    Bless those fighting for us.

  5. Thanks for this.

    The Barts service is jointly headed by Prof. Peter White who has been very close to the CDC's CFS program.

    One can read about the very hardline views they expressed on the draft NICE Guidelines at: i.e.

  6. Stories like this are revolting. May it all come to an end soon! The above link doesn't work

  7. Thanks for the info on this protest - I've sent them an email as I can't attend in person. :)

    I just hope they listen.

  8. Thank-you Mindy. That St. Bart's is hosting a training day to celebrate their 25 years of abuse of ME patients really rubs salt into our already deep and open wounds. The abuse of Ean Proctor taught Wessely nothing. Over 20 years later they are still abusing patients, including children. The latest episode is Esther Crawley's totally unethical study of the well-known scam The Lightning Process with newly-diagnosed children with ME. This was is how their description of the event on their website SHOULD have read, in my opinion, considering the speakers are all Wessely School psychs (Wessely and White) and their sheep (Chalder and Crawley).

    For Clinicians

    To celebrate 25 years of patient abuse we are planning to host a training day where internationally renowned speakers, practitioners and patient don't-carer representatives meet together to look at developments in mistreatment, bogus research and new innovative ways of working around all the evidence that ME is an organic disease.
    The CFS/ME Service at St Bartholomew's Hospital has a strong commitment to psychological research and promoting its dominance over clinical practice to provide abuse for patients with this complex condition. Both reflective clinical practice and absolutely-no-evidence-based treatment form an integral part of service delivery.
    As the service has evolved, an important development has been the way the service has been able to get away with murder by abusing and wilfully neglecting the ME patient community. Through establishing a completely powerless role for patients and carer representatives, both patients and carer representatives have attended service meetings and formed a helpful link between other patients and the service about issues of absolutely no interest to us at all.
    The training day will offer the opportunity for people from different areas of incompetence to share information together. Self-styled experts, clinicians, patient abuser representatives, mal-administrators and ill-informed general practitioners will be able to review the past and learn of future atrocities. Participants will be able to: be a part of the celebration; share mis-information; receive the wrong training and/or contribute towards the dumbing-down and skills debasing of others.
    There will be time to have our cake and eat it at the end of the session, as we have done for the past 25 years! There will be a round of, "For we are jolly good felons" .. and so say all of us!!

  9. Thanks for all the support to us in the UK.
    You and the US keep hope alive.Thank You.


  10. Thank you Mindy for covering our protest. Around 10 people made it through the bitterly cold weather and the tube strike to be there on the day.

    I've put up an update on the website and some photos

  11. Annette, Congratulations and THANK YOU for contradicting the Bart's "celebration" and for Mindy to publicize it. It had to make the attendees think. I sent emails and wished I had Wesseley's email address. The president of the US doctors organization (IAME/CFS) is a psychologist and also believes in positive thinking ( ) and as you know, the CDC brings in the British shrinks to our meetings. What really hurts is that the comments from some patients show they swallow the idea! We must be polite, calm ourselves, be of one mind, speak with our "inner voices". Unless we see patients get good and mad and ACT UP like you did in focused confrontations, we will continue to lose. Many patients think that XMRV will shortly be their savior and are content to sit and wait. They don't know their history (they think the movement started when THEY got sick). Decades of history makes it clear that we have to stand up as you did. I can only hope that you have inspired some over here to visibly stand up to the government. I wish you lots and lots of warm soup.

  12. donate blood every 2 weeks, then they will take it more seriously...sincerely aidan walsh southampton, u.k.

  13. the new york mob would have gotten rid of them a long time ago...the u.k. medical system is 30 to 40 years behind north america...


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