AndyPR
Senior Member
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Lol, so they are admitting that researchers previously haven't had success with their studies!3) needing to get off the ground, success breeds success etc
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Lol, so they are admitting that researchers previously haven't had success with their studies!3) needing to get off the ground, success breeds success etc
In their letter, Peter White et al state: “The PACE trial paper refers to chronic fatigue syndrome (CFS) which is operationally defined; it does not purport to be studying CFS/ME”.
The sentence continues by stating that the PACE Trial studied: “CFS defined simply as a principal complaint of fatigue that is disabling, having lasted six months, with no alternative medical explanation (Oxford criteria)”.
http://www.investinme.org/Article42...oper to undated letter by White to Horton.htm
Prof Jones is an immunologist treating patients with the liver disease PBC. Symptoms include fatigue, sleep disturbance, cognitive disturbance and ANS dysfunction. Prof Jones described the lessons learnt from research into the disease. Name changed by patient power. Importance of listening to patients and getting medical students interested. Developed a QOL measure used in 95% of PBC studies. Single universally used measure in research is critical. Importance of large cohort studies, can then subgroup/stratify. In PBC not simple connection between disease and symptoms. Need to think carefully about the disease model.I see that Professor David Jones is giving the Anne Faulkner memorial lecture at 3:30 pm.
Any indication of what it will be about?
Who is he? I don't think I'm familiar with the name. Is he this bioinformatics guy?
http://www0.cs.ucl.ac.uk/staff/D.Jones/
I think the MRC segment was very much a 'blame the victim' exercise. Unedifying to watch. The ICO tribunal decision was very disparaging of the 'harassment' claims, but weeks later they are still raked up.
As ME sufferers, how could we possibly understand such grace under pressure.There is a curious phenomenon at play with the harassment claims.
Those researchers who might genuinely claim to be harassed have no difficulty in displaying their fortitude by continuing to submit grant applications and receive funding. Yet this is supposed to put off the researchers whom we might wish to support and who have no reason to suppose that they would be harassed.
Perhaps they are all of little resilience compared to the stalwarts of the BPS school.
The Times and harassment
The Times yesterday had an informative piece about ME/CFS, which also mentioned the issue of harassment of researchers and alluded to bitterness and confrontation (read more http://bit.ly/2cEKS5w). The issue was also raised today at the 3rd UK CMRC conference in Newcastle, so we thought we’ve give ME Research UK’s perspective on the matter – which can be stated very simply.
Our charity has been funding biomedical research studies for 16 years, and has supported financially more than 40 individual projects in the UK and overseas (see an overview http://bit.ly/1mNZkvM). In that time, none of our grantholder–researchers has complained to us of campaigns of harassment, whether from patients or anyone else. No doubt robust individual exchanges of views have occurred from time to time, but these are part of the terrain when people feel passionately about an issue; they may even be welcome as a valuable addition to the scientific debate.
The photo shows our Chairman Dr Vance Spence at the conference today with researchers we have funded, none of whom seems harassed. They are (L to R) Prof Julia Newton (Newcastle), Dr Vance Spence, Dr Sarah Knight (Australia), Victoria Strassheim (Newcastle), Dr Clive Carter (Leicester) and Prof David Patrick (Canada), and details of their projects can be found on our website.
Not avoiding the issue then.This is all they have commented so far, in answer to me pointing out White and Crawley were on board. Disappointed at the moment but also aware we haven't heard from Charles Shepherd.
View attachment 17531
Or other patients who died of complications from heart damage, like Alison Hunter age 19
So young people are dying of ME CFS from cardiac damage, and EXERCISE is the nominated therapeutic intervention WITHOUT SCREENING TESTS FOR CARDIAC HEALTH/INFLAMMATION PRIOR TO GET THERAPY. Sounds safe. I'm sure the MRC knows what they're doing after all they are aware the UK blood supply has been protected since the late 1980's and in the 1990's CFS was added to ban on blood donation alongside PVFS and ME. They do know this, right? And the patients were told this at each conference, right? Otherwise they might go donate after CBT, and infect other people with the illness belief of ME. Very unsafe, these transmittable ''beliefs'' in a virus - hence the importance to spend £5 million of tax payers money.
Children with CFS/ME had increased oxidative stress compared with control individuals (isoprostanes: 252.30 vs 215.60 pg/mL, P = .007; vitamin C, mean [SD]: 0.84 [0.26] vs 1.15 [0.28] mg/dL, P < .001; vitamin E, 8.72 [2.39] vs 10.94 [3.46] microg/mL, P = .01) and increased white blood cell apoptosis (neutrophils: 53.7% vs 35.7%, P = .005; lymphocytes: 40.1% vs 24.6%, P = .009).
Source:
Arch Pediatr Adolesc Med. 2010 Sep;164(9):817-23. doi: 10.1001/archpediatrics.2010.157.
Biochemical and vascular aspects of pediatric chronic fatigue syndrome.
Kennedy G1, Khan F, Hill A, Underwood C, Belch JJ.
So the MRC are having a conference where doctors are potentially disabling children as a therapy the kids (they) 'want', when we don't know who 'they' are, as we have no test and yet patients in the community with ME, report this can worsen then so badly, they never recover.Source:
Source: Free Radic Biol Med. 2005 Sep 1;39(5):584-9.
Oxidative stress levels are raised in chronic fatigue syndrome and are associated with clinical symptoms.
Kennedy G1, Spence VA, McLaren M, Hill A, Underwood C, Belch JJ.
Yet the MRC are funding research that reports (using no science) GET makes people better, by using broad fatigue criteria but still using the word ''ME'' in their ''CFS/ME'' - with no objective test to prove this claim by the researchers.Source:
UK charity - The 25% Severe ME group
Severely Affected and Graded Exercise Survey
2004
http://www.25megroup.org/Information/Group Publications/Group reports/March 2004 Severe ME Analysis Report.doc
Would we define broad criteria chronic fatigue as ''CFS/MS''? And if we did, would it be legal, never mind ethical in adults never mind kids to then recommend GET for Multiple Sclerosis to overcome an alleged fear of exercise? (No research supports this).
I guess my concerns are invalid and we can rest assured we are in safe hands. (I was worried for a minute there no one actually knows what they're doing).
In 32 patients from the United States and Israel with multiple sclerosis the role of psychological processes was examined in relationship to the transitional period between health and the onset of disease. In 28 of these patients the emergence of symptoms ultimately diagnosed as those of the demyelinating disorder occurred in conjunction with a psychologically stressful situation. The corresponding intra-psychic state was characterized by difficulty in coping and feelings of helplessness. In spite of cultural differences among the patients there was an impressive similarity in these psychological processes. Illustrative case material is presented.
There's been a similar study on AIDS from the 1980s referred to on this forum. History does indeed repeat itself.I don't know whether you're aware of it, but George Engel (the originator of the "biopsychosocial model") produced studies like this:
The Role of Psychological Process in a Somatic Disorder: Multiple Sclerosis 1. The Emotional Setting of Illness Onset and Exacerbation
It is sometimes helpful to keep things in historical perspective...
Anonymous, 19 year-old female. Died 1986. Cause of death: severe, progressive ME. (Source: letter from family member.)
Jason L. Brekenridge, 23, died on December 16th, 2005 in Baldwinsville, NY. An autopsy found he died of a seizure. Jason was disabled with CFIDS/ME shortly after receiving two associate degrees in technology and business management from Bryant & Stratton College. He had to move in with his parents...
Daniel Chang-Bard, 21, died in the spring of 2012. He got sick while a student at McGill University and when he was preparing to go to Peru to volunteer at an orphanage along with some fellow students. He had four vaccines that were the trigger to allow CFIDS/ME to take over his life for the next three years.
Emily Louise Chapman, died in February 2006, age 20. She had been diagnosed with CFS at age 13, and in the last year of her life, she developed chronic pancreatitis; before her illness she excelled in sport, academic work and creative arts. Emily’s deteriorating health was exacerbated by the relentless hospital programs over 15 months and medical abuse.
Rebecca Grace Childs, 23, died of respiratory complications of CDIDS/ME on April 27th, 2010, after a courageous fight with it since she was a young child.
Sophie Coldwell, 17, died of leukemia less than two weeks after doctors at a walk-in clinic in England sent her home saying she was just tired and had tonsillitis and gingivitis. She had already been diagnosed with “CFS” weeks earlier..
Skye Dailor, 14 year-old female. Died September 1st, 1990. Cause of death: heart attack caused by lethal dose of pills following taunts by classmates. Her physician, David S. Bell, M.D., FAAP, dedicated his first book in her memory.
Casey Ryan Fero, died on July 4th, 2005 in his sleep at age 23. An autopsy showed he died of myocarditis, a viral infection of the heart muscle. Casey had CFIDS/ME since the age of nine.
Jenny Hill, died in April, 2007, at age 24 in Australia. According to The Sydney Morning Herald, "A bout of flu progressed into headaches and exceptional tiredness, and by the next year, with no resolution in sight, she was referred to a psychiatrist. Three years later a leading immunologist still thought she was having trouble re-entering normal life after being knocked around by a virus. He prescribed gradually increasing exercise....
Matthew Hodding, 20, took his own life in 2006 after suffering acutely with CFIDS/ME for over half his short life. His father told the coroner's office that his son believed in reincarnation and he "was seeking a new life. Matthew suffered from extreme pain in addition to numerous other symptoms and social isolation.
Alison Hunter, struggled with many years as a child with CFIDS/ME in Australia. She died at age 19 of complications of the disease. A foundation was named in her memory.
Glenn Marcus, male in early 20s, 1994. Cause: Unknown. Autopsy showed stomach seemingly exploded with bits found throughout body. Died in his sleep while attending college part-time in California. A Massachusetts resident, he had CFIDS/ME since a young teen.
Tara Morgan, 20, died in September of 2011. When her brothers called to her and got no response, they found her not breathing in her room in Letchworth (UK). Ambulance medics were unable to revive her. The inquest noted that she "had a history of being unwell for some time" and that her immune system "had been unwell for some time". They felt her death was due to a "dysfunctional immune system" and said it could have something to do with "her chronic fatigue syndrome"....
Guy Ramsey, 18, died by his own hand in July of 2009. A victim of CFIDS/ME, Guy got sick at age 12 and often had to miss school. He tried multiple remedies including light therapy and acupuncture but saw little or no help.
Matthew Brandon Sooy, died in April of 1997 at the tender age of 17. When he was just 3, Matthew was diagnosed with asthma which the physicians did not understand was the beginning of CFIDS/ME. He was twelve before he was diagnosed correctly.
Victoria Webster, 17, died of ME in September of 2011. She had the disease since she was a baby although it was not correctly diagnosed until she was 13 years old. Victoria suffered severely with ME while her family found themselves battling various agencies.
I think Crawley's approach to pediatric MECFS makes it look like a walk in the park...."Look, they like GET." Maybe she hasn't seen these memorials.
From http://www.ncf-net.org/memorial.htm: