"As of 1st November 2010, blood donors who report that they have had
ME/CFS will be permanently excluded from giving blood in the UK. This
change is being made on the grounds of donor safety, as ME/CFS is a
relapsing condition. It brings practice for ME/CFS into line with other
relapsing conditions or neurological conditions of unknown origin"
..the statement above, today on CoCure, from the Department of Health, to the MEA is a major victory; many thanks to Charles Shepherd .
The DOH's previous position, just over a month ago, was that "in the absence of any infectious cause of CFS",people with ME were prohibited from donating blood "while they felt unwell". However Shepherd stressed that "whilst it is true that the role for persisting infection in ME/CFS remains uncertain there is very sound evidence, as is referred to in Sir Liam Donaldson's report into ME/CFS, to show that a variety of infections, predominantly viral, can precipitate this illness. There is also evidence of reactivation of latent viral infection (eg EBV and HHV-6) in some of these patients." So presumably that is now accepted.
It's another step along the way.
As is Harvey Alter's MRV study, although it has gone largely unreported here in the UK. As Jean Harrison points out today on CoCure : " Apparently articles on scientific advances are vetted by the Science Media Centre, Science Advisory Panel " And who sits on that panel ? Professor Simon Wessely, whose influence over Government policy just goes on and on : " despite having been shown to be so wrong about, for example, the Camelford disaster, Gulf War syndrome, the dangers of mobile phones, the nature of IBS, the nature of fibromyalgia and the nature of ME/CFS ".( Wessely's Way: Rhetoric or reason? Margaret Williams and Malcolm Hooper http://www.investinme.org/Article-130%20Williams%20Hooper%20Wesselys%20Ways.htm )
Wessely takes a dim view of viruses and ME : " What lies behind all this talk of viruses and immunity ?... In consequence, talk of viruses and the immune system is now deeply embedded in popular consciousness ... Viruses are an attribution free from blame ... there's no blame, no shame and no stigma ... and here is the virus research doctor himself to protect us from that shame... And what is it he delivers? Respect!"
"Most CFS patients fulfil diagnostic criteria for psychiatric disorder. Other symptoms include muscle pain and many somatic symptoms, especially cardiac, gastrointestinal and neurological. .... Do any of these symptoms possess diagnostic significance? The answer is basically negative... The description given by a leading gastro-enterologist at the Mayo clinic remains accurate. 'the average doctor will see they are neurotic and he will often be disgusted with them.' "( Wessely's Way)
Following publication of Alter's study Craig Maupin has so movingly written on CoCure today : "It is an remarkable time in the history of this devastating illness. Hopefully, recent findings will hold, and it will be a time to celebrate freedom -- with thankful hearts. " How I wish I could agree with him. How I wish I could hold up some glimmer of hope for my wife, in so much pain and suffering.
There was so much hype around Alter's study . I wrote in the BJN last month :
"The XMRV discovery, hailed by patients as the ‘game-changing scientific event we have been waiting for’ (CIFDS Association of America, 2009), is seen as a wake-up call to the medical establishment, which has neglected biomedical research and input into ME/CFS (Whittemore Peterson Institute, 2009)"
But I have to say I have not been dancing in the street. We thought the long-awaited publishing of the article would change the world, instead the PNAS paper feels like a profoundly depressing inconclusive, massive non-event, from where I sit, dazed by the seemingly unstoppable power of the psychiatric lobby (I have a lot of dealings with skeptical medical professionals recently) and befuddled by all this new talk about changing the name of XMRV to HGRV and for those who are positive, calling the disease (ME?) HGRAD : "haggered"??
Some criticize the name but hey, here on the front-line "Rad" means "radical"!
Now there's a pointer ; here lies the way ahead !!
"The psychiatric lobby is now marked by its financial power –... its roots in major medical research institutions like the MRC and increasingly its links to corporate lobby groups funded especially by the pharmaceutical companies.
The patient, or ‘sufferer’ group which has been forged simply by its opposition to the psychiatric lobby, has inevitably consisted of disparate groups and individuals. Inevitably, because unlike the psychiatric lobby, this grouping has no common ideological purpose nor does it have a hegemonous leadership. Mainly, as well, this group is composed of people who are ill or their carers, circumstances which leave little room for organised campaigning. The only two defining criteria of this group are, first, they seek effective treatments for ME and second, they have pressed the research community to carry out physical research in order to find the organic causes of ME."
(Realpolitik and ME, Martin Walker 2005)
Exactly ! Until we as an ME and Carer community get our act together : and how can we, given the particularly cruel nature of ME, the psychiatric lobby will not be ruffled in the slightest by the PNAS paper or - as we have seen- the Science paper or any other paper or name change : they have the power and resources to easily shrug all that stuff off .
"Radical "though, comes from the Latin "radicalis" which means "root". Here is where the change will come, I believe. Grassroots action , if every single person with ME was to say "No More!" and take action ,if possible, in whatever small way they can, to change things locally , the authorities would crumble , deluged by tens of thousands of demands for biomedical services. My wife and I have shown how powerful this can be.
Years of campaigning, of pursuing a formal complaint process, of I and others putting ourselves on the line time and time again,of taking all kinds of risks, have led to our local health authority agreeing, after a huge struggle, that people with ME require a biomedical service and that GET is not appropriate.
We may not be able to organize, to get together at all, to march in the streets : but we still have a very important job to do. Change is not going to come just through the WPI or any number of articles alone, it is will only come to the extent that you and I realize that our job is to make it impossible for people with ME to be dismissed.
My wife , who has very severe ME, is in dire need of proper biomedical testing and treatment. I have scoured the internet seeking out information on Treatment Protocols for the Severely Affected. I cannot find a single one !!
Those protocols I did find were wildly inappropriate for my wife, who is far too ill to attend a clinic, participate in a lengthy examination process, rise an exercise bike, go on tilt table etc .
How many clinicians have a clue about severe ME - you have to wonder !!
It seems nothing has changed much since the research I carried out in 2006, for the the 25% Group, which uncovered a shocking picture of severely physically ill ME sufferers being labelled as psychiatric patients, being treated with contempt by many GP's, doctors and nurses, being locked in secure units and shut in AIDS wards, being refused food and being forced to participate in inappropriate graded exercise and behavioural therapy, designed to convince them there is nothing seriously wrong with them and that proper physical testing should not be encouraged.
It’s not just the neglect of those with severe ME; the wider picture is also profoundly distressing. The fact is that very few people with ME are getting any kind of diagnostic/treatment service.
Here are just a few illustrations from the literature that I have
uncovered :
“In the USA, more than 80% of CFS/ME patients have not found a provider expert enough to make a diagnosis, let alone treat their illness. It is a gaping hole in our health care system, and is true across the globe. Our patients are falling into this chasm. The lack of providers with any training in this field guarantees that this will remain the single biggest issue facing our patients. As investigators, it deprives us of our subject population and skews the population we do study to those patients that can overcome the barriers of our health care systems to seek expert care. All in all, this is simply unacceptable.”
Introductory letter onhttp://www.iacfsme.org/byNancy Klimas, M.D. President,
International Association for CFS/ME (IACFS/ME) 2008.
………………………………………
“Canadian ME/CFS doctors have waiting lists as long as three years, and many are no longer taking new patients. Diagnosis of ME/CFS remains inefficient and diagnostic times average 5 years. “
“Treatment has been palliative at best, based on trial and error application of anecdotal evidence and has been mostly limited to the relieve of specific symptoms. This has been largely inadequate. “
http://www.ahmf.org/infosheet.htm
………………………………………
“As of Spring 2008, there is no ME / CFS clinic in Ireland… no agreed diagnostic protocols, no treatment protocols and no approved medicines for people with ME / CFS in Ireland today. ME / CFS patients are being left to suffer and in many cases die from their illness. This situation is unacceptable. “
http://www.cfs-ireland.org/
………………………………………
“People were asked ‘ What services , if any, are you receiving to help you with your ME ?’
Out of 21 people , ten people say they are receiving “none”, when asked ‘ What services , if any, are you receiving to help you with your ME ?’
"I currently receive nothing." says this patient, after the PCT "decided to withhold any further funding for outpatient treatment ." "None" says this patient, in reply to the question : "what services , if any, are you receiving to help you with your ME ? "
"None" says another patient.
“None” says yet another.
One patient reports how the James Paget sends them a : “Questionnaire every six months after initial visit. GP who only teats "a symptom" and not ME/CFS as a whole."
However this patient : Attended James Paget once last year – no follow up.
Another severely ill patient recounts how they have been deemed “too ill” to receive a service : I saw an ME Consultant in 2003 and was told I am too ill to benefit from any help. There is currently no service available in Norfolk that offers help to someone like me with severe ME with neurological symptoms.
After years of not receiving any help, after their leg muscles had "atrophied" a severe ME patient states how : in later years I saw Terry Mitchell at James Paget - he is superb Consultant. But even so, the damage has been done for me physically and no one has been able to help me recover further.
Another patient is a :“Current patient with NHS CFS Service (Since Sept 2004 diagnosis) 3 OT Assessments the last being May 2007”
However they have experienced :“General ignorance and prejudice of former GP and a Consultant Neurologist. “
In addition, the severely affected in Norfolk and Suffolk encounter disbelief, an almost total lack of proper biomedical treatment and they even encounter abuse from some medical professionals and are left to deteriorate; left untreated ME can get worse. (Peckerman et al 2003[i])
This patient reveals how she was : Told to get out more and get up earlier and do my housework early because my husband who has been fighting lymphoma was far iller and suffering far more than my daughter (who has ME too) and myself. We tried and we were very ill and I have suffered severe pain in my feet, knees and joints. My daughter also. The cold way my doctor treated me , made me really cry when I came home and I was very stressed for a long time afterwards. She made my daughter and I feel a fraud even though we were not.
This patient describes how they were referred to a : Consultant specializing in Diabetes – he seemed to have no interest in CFS and offered no help beyond suggesting, following various blood tests, I might have CFS.
One severely ill patient describes how they were forced to
undergo : " hospitalisation and enforced mobilization . I had to walk to the canteen to get food and drink which I only managed once a day. Lost 9lbs in 5 days. "
Another patient states how "It does not hep to take time and energy to see medical professionals who do not believe I have a neurological illness. "
This patient goes on to explain how : "It is soul destroying to have a World Health Organization recognized illness that neurologists are not interested in even exploring or validating. The neurological symptoms can be extremely frightening and severe . I don't have the energy or the physical ability to cope with being insulted and demoralised on top of being dismissed, when I have extreme paralysis , spasms, all over body numbness, facial palsy - things not to be dismissed lightly and not to be left to get on with by yourself.
A patient describes how :When I visit hospital I need to lay down - as sitting up causes me severe pain . I spasm in my abdominal chest muscles and the same in my neck and lose the inability to support myself thereafter
Yet another patient describes how : The woman I saw had no compassion or understanding of ME and I felt like throwing myself under a bus when told I had no life, I should get out into the world and do more.”
EAME/25% Group Survey by Greg & Linda Crowhurst
http://www.stonebird.co.uk/background.html
………………………………………
“The APPG is aware that many patients who are severely affected by this disease are receiving either inadequate care or no NHS care at all, which is clearly inconsistent with the NICE Guidelines.”
“The severity of ME/CFS can vary from being bedridden to leading an almost normal life. If a study or therapy requires patients to come to a CFS clinic the most severely affected patients (30% and lower) will be underrepresented if present at all, and the mildly affected patients (70% and higher) who have a (part-time) job probably will not participate as well. Whatever it is you are studying, any conclusions you draw will only be valid for a subset of the ME/CFS patients … and for a given set of diagnostic criteria.”
“The ME/CFS/CFIDS Dark Ages have spanned the past 30+ years. During the past three decades, there are two notable factors that have played a significant role in holding back ME/CFS/CFIDS progress. 1) The Disease Etiology had been unknown; and 2) The CDC changed our illness from a distinguishable name of Myalaic Encephalomyelitis to Chronic Fatigue Syndrome. ME/CFS patients began to realize that the new name not only failed to describe the severity of the disease, but it also fueled hostility towards the sufferers ..”
“. .. for many a diagnosis is only the start of their problems. They have been given a label for which there is no known cause, no specific treatment and an uncertain outcome.
Indeed, new patients, rather alarmingly, find two black holes awaiting them. The first is lack of credibility. The enduring stigma of “yuppie flu” and confusion with general tiredness means the public perception of ME/CFS is poor. Patients’ families can, therefore, be unsympathetic, as can doctors. Indeed, studies show that roughly half of GPs don’t believe the condition actually exists….
The second black hole relates to treatment. Since the underlying causes of the illness remain unresolved and no treatment exists, prescriptions are given for particular symptoms, such as chronic pain or sleep problems.This can cause patients to become disillusioned, and many tell me they have not seen a GP for many years, preferring to struggle on alone rather than face what they see as a lack of understanding.”
“ Governments around the world are undoubtedly complicit in the M.E. cover-up and the ‘CFS’ scam. Governments have not served the interests of their people. The public has been sold out by governments protecting their own interests and those of their allies in industry and big business. Governments have saved money by failing to support M.E. patients in three distinct areas:
Research: instead of the appropriate levels of funding for biomedical research on M.E. (similar to levels spent on diseases which are less devastating), governments make huge savings by spending small amounts of money on useless ‘CFS’ research involving mixed patients groups.
Welfare: the rightful welfare claims of M.E. patients have frequently been denied. In many countries where disabled patients who are unable to work are in theory eligible for welfare payments, in practice the welfare system makes it very difficult for a patient with M.E. to qualify. Even if a claim is successful, the system may incorrectly categorise the M.E. patient as suffering from ‘CFS’ and so a primarily psychological illness; in the UK, for example, a lower rate of welfare payments are made for those deemed to suffer from psychological illnesses.
Medical care: in those countries where health care is in theory available to all, because government policy does not recognise M.E., appropriate medical care is not available for M.E. patients. For example, appropriate brain scans, other neurological testing and cardiac function testing are not routinely offered to M.E. patients. In addition, severely disabled M.E. patients may not receive even the most basic medical care. These patients are bedbound and housebound and unable to visit the doctor, and may not be successful in obtaining home visits from doctors who are not knowledgeable about M.E.”
Jodi Bassett
http://www.hfme.org/whobenefitsfromcfs.htm
………………………………………
“You’ve been listening to patient testimony for years, If you really thought this is a serious issue, why do most doctors still have no idea what CFS is, and many have never heard of ME.
Why have government funds for the study of this disease dwindled over recent years?
Why is this disease not taken serious by our researchers?
Why do our peers not take this disease seriously?
Why hasn’t the name chronic fatigue syndrome been changed, to accurately reflect the nature of this disease?
Why does the U.S have the most watered down definition of Chronic Fatigue Syndrome?
Why are there no facilities equipped to take care of severely ill ME/CFS patients?”
“In fact,77% of CFS patients report negative experiences with health care providers, and 66% believe the treatment they received made them worse. As a result, many patients have lost faith in the medical profession and have simply stopped seeking any treatment, considering it a waste of time, money and their limited energy to attend an appointment where they will likely again be verbally abused as being lazy or crazy rather than physically ill.”
“ James Ibister, head of Haematology at Royal North Shore Hospital, Sydney, said about Alison Hunter:
“To be honest, I felt helpless towards the end. On many occasions I was extremely embarrassed about the way she was treated by the system. A lot of terrible things Alison went through were doctors projecting their own fears and inadequacies. How anyone could not think she had a major medical illness was beyond me”.
Alison, he said, suffered “terrible physical distress compounded by insults and inhumanity.
In 1998 the Countess of Mar presented a document to the Chief Medical Officer which contained details of 63 people with ME/CFS known to have died, including 20 cases of suicide (age-range 14-50). Reasons given included unbearable pain and inability to cope with disability. Professions included medical doctor, nurse and teacher, as well as mother.
There were 43 cases of non-suicide death (age-range 19-70), which included 10 cases of ME/CFS complications, including progressive ME/CFS (a 19 year old female), very high levels of HHV-6, mitral valve prolapse, and EBV infection.
These included seven cases of cardiac failure, including cardiac arrythmias and cryptogenic myocardial fibrosis, as well as heart attacks.
There were four cases of those with ME/CFS developing cancers, including brain tumour.
There were nine other cases, which included ulceric gastritis, atypical pneumonia, toxoplasmosis and bacterial infection of the brain, seizure and haematomas.
There were cases of pancreatic cancer, a further case of cryptogenic cardiac failure, plus endomyocardial (Leo Eslers) fibrosis.
There were cases of hepatic and renal failure, and of intravascular coagulation (that particular patient had only 2 months earlier been 'treated' at a London Teaching Hospital and told she suffered from severe depression).
Other studies showed additional cases where ME/CFS patients died from cardiac failure.
(Source Marshall & Williams 2006 www.meactionuk.org.uk/Inquest_Implications.htm)
………………………………………
[i] Peckerman et al (2003) Abnormal Impedence Cardiography Predicts Symptom Severity in Chronic Fatigue Syndrome, The American Journal of Medical Sciences 2003; 326 (2) : 55-60
Psychological Assault : a Stonebird response to AfME's position on the proposed Bristol Lightning Process study.
Greg Crowhurst 23 Aug 2010 (Permission to repost)
As it did over the NICE guidelines Action for ME has chosen again to take a lone controversial stand on ME, one not supported by the majority of UK ME Charities.
Any clear understanding of ME can only be based upon a clear definition. It is difficult to find out the exact details of the proposed Bristol LP study , however if it is based upon the Oxford Criteria, then the Ethics Committee will not be able to discern precisely who the trial is for, as the Oxford criteria exclude those with neurological disorders . Used only by a small group of English psychiatrists (the Wessely-school) and by the university of Nijmegen, Netherlands (Neilson 2002), the Oxford criteria , by definition, excludes all those with authentic Ramsay-defined ME from study . (This is good, because in theory it should exclude children with myalgic encephalomyelitis, from the study.) The proposed study seeks to compare the LP against "medical treatment ". What "medical treatment" specifically ?
The fact is there is no medical treatment for people with ME available on the NHS currently; there are only psychiatric therapies (Cognitive Behaviour therapy and Graded Exercise Therapy), strongly condemned right across the board by patient groups, is this proposed study referring to some treatment which no one knows about ?
How can the Ethics Committee determine whether or not these children might benefit from training to change their thoughts and beliefs if proper biomedical tests, which do not yet exist on the NHS, to determine what is biomedically wrong with the children have not been carried out first? What child isn't going to want to be well, to please, to not admit failure and this, as the 25% Group (CoCure Aug 22 2010) the ME Association , TYMES Trust, Invest in ME and others have stated, brings up very troubling issues indeed. One aspect that might deserve more attention though, is the danger to children and the devastating impact upon families, of participating in a process that in Spain is firmly viewed as a cult : " LP is a health sect and as such, it should be denounced and kept away from children. In Spain we have had them researched by Sect Specialists and yes, they are a sect (use of hypnosis, harassement of family members of participants, money issues).
We have threatened them with legal action if they went ahead with their plans to expand to Spain (they already had a Spanish speaking person hired to do so and had set up several workshops in the Canary Islands which they had to cancell after our threats). We also, last year, informed all Spanish ME, FMS and MCS associations of LP and warned them to stay away from them." Clara Valverde, President LIGA SFC, email to 25%Group 20th Aug 2010 As Aylwin Cathpole (http://meworld.wordpress.com/2008/11/27/the-lightning-process/ ) points out :
"How could a three-day ‘process’ cure anyone of the catastrophic effects of ME on the immune system, cardiovascular system, endocrine system, brain injury, mitochondria) dysfunction and multiple co-infections? The Lightning Process is little more than a pyramid-selling style money scam with many of the hallmarks of a cult. One of the hallmarks of a cult is thought control . As the 25% Group point out the LP is clear that it aims to get people to "think very differently."
Singh (1998) (http://www.factnet.org/Thought_Reform_Exists.htm) describes how "thought reform programs can be distinguished from other social influence efforts because of their totalistic scope and their sequenced phases aimed at destabilizing participants' sense of self, sense of reality, and values. "Thought reform programs rely on organized peer pressure, the development of bonds between the leader or trainer and the followers, the control of communication, and the use of a variety of influence techniques. The aim of all this is to promote conformity, compliance, and the adoption of specific attitudes and behaviors desired by the group. Such a program is further characterized by the manipulation of the person's total social environment to stabilize and reinforce the modified behavior and attitude changes." Another name for thought control or brainwashing is coercive persuasion, a psychological force which as Singh (http://www.factnet.org/rancho1.htm) points out can be even MORE effective than pain, torture, drugs, and use of physical force and legal threats.
The 25% Group believes that the LP " essentially involves potential participants in signing up to a belief system." However Singh would argue that the thought -reform process is actually much more sinister than that : coercive persuasion is not a religious practice, "it is a control technology. It is not a belief or ideology, it is a technological process. ITS REPREHENSIBILITY AND DANGER IS THAT IT ATTACKS OUR SELF-DETERMINISM AND FREE WILL." John Dewey calls coercive persuasion "psychological assault" (http://www.factnet.org/rancho3.htm). I can think of no better term to describe the campaign of denial, the forcing of people over the years - even to their deaths, like Sophia Mirza, into punitive psychiatric therapy programmes, to change their "maladaptive thinking" that they are genuinely ill, the chronic neglect and isolation of the most vulnerable and the most sick , that so characterizes official policy towards people with ME. So many millions have already been wasted , still nothing is being spent on proper biomedical research : and now even more hundreds of thousands of pounds are going to be thrown away upon the useless ongoing use of pseudo-science in ME. Kahil Gibram said of our children : "You may give them your love but not your thoughts, for they have their own thoughts."; if a child with ME thinks she is ill, she IS ill !! There is no need for the Lightning Process , but every need for proper biomedical tests and treatment to be developed and to be made available on the NHS. End of story. That is the message that AfME has so failed to deliver. As Bayliss ( M.E. and Political Conflict http://twentysixsoldiersoflead.wordpress.com/category/action-for-m-e/) states : "Enough already, the time has come to sadly disassociate with ..AfME and other appeasers – they are part of the problem not the solution."
"'In purity and according to divine law will I carry out my life and my art.(Hippocratic oath) '"..except that is, when someone with ME walks into my consulting room, my doctor's heart will sink and I will seek to boot them out the door as quickly as possible.
With a condescending air bordering upon pride and a quirky self-satisfaction, I will remain airily unconvinced that ME is real , even if one of my children have it; I am a "skeptic", I am not on your side.
I will leave you to suffer, alone, for years on end, without even examining you...blah, blah, blah...."
This is the reality of trying to get treatment for people with ME.
It's the rhetoric that in our experience, so characterizes ME - and is completely soul-destroying . There 's lots of good intentions, wonderful presentations going on all over the place. But really, really, when it comes down to it I am not convinced that anyone knows what to do with Linda, so severely ill. EVERY clinician or world-leading authority we have consulted has let us down .
The " heart sink " factor , it's real - right across medicine , even amongst those who you think you could totally trust.
The medical establishment today would most likely dimiss Florence Nightingale as a "malingerer" in need of Cognitive Behaviour Therapy to "cure" her "maladaptive thinking.
Florence Nightingale ( and Charles Darwin too by the way) , who suffered, most likely from ME - leaving her housebound, too fatigued to talk to more than one visitor at a time, for many years, would despair at the way the NHS offers no physical tests, no biomedical treatments for this neurological disease, rather it just leaves patients in agony, as it did in her day, suffering from a multitude of severe physical symptoms for decades on end.
ME Awareness Week , every year is timed to coincide with Florence Nightingale's birthday.
What would Florence Nightingale,say to Andrew Lansley about the Government refusing to spend even a penny on desperately needed biomedical ME research - while wating millions every year upon useless "thought-changing" psychiatric "therapies"
Oh, but Florence Nightingale would simply be dismissed, without any proper investigations, as an "hysterical" woman, I almost forgot; she would stand little chance of influencing much today.
ME is reckoned to be five times bigger than AIDS, the annual cost to the USA economy alone is estimated to be $ 20 billion : how much longer can the world afford to ignore it ?
ME is front page headlines !! Stumbling into my local village newsagent early this morning, after my bike ride, I could easily read the BANNER headlines at a distance , even with the sweat in my eyes :
"AT LAST A RAY OF HOPE ; CITY COULD LEAD THE WORLD ON ME"
I paid for my copy of the Eastern Daily Press (EDP) and walked out of the shop with a big grin on my face.
Sometimes, you know, you get moments like this, dramatic, triumphant moments that spur you on , keep you fighting.
Right now , my wife lies in bed, too ill to join in .
My joy, though this morning, is unbound. I just want to pay homage to Invest in ME, for all the hope they have given me, especially today. There are no words that could possibly express my admiration and gratitude for their incredible courage , sacrifice and unswerving determination.
