An awful lot of nothing
An awful lot of nothing :
the lack of treatment for people who have ME.
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
, 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.” USA
Introductory letter on http://www.iacfsme.org/ by Nancy 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. “
“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 today. ME / CFS patients are being left to suffer and in many cases die from their illness. This situation is unacceptable. “ Ireland
“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
that offers help to someone like me with severe ME with neurological symptoms. Norfolk
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 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]) Suffolk
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
“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.”
“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
Teaching Hospital and told she suffered from severe depression). London
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
I really despair, Greg. It must be so soul destroying as a carer. My mum is my main carer but I live alone. She says the only way she can cope is the fact she can go home and have respite. Even with the Alter paper coming out, the lack of recognition and publication in the UK is practically non-existant. Where is the hope?ReplyDelete
Thanks Elle, that is so perceptive: my post is triggered very much by the Alter paper, for it serves to highlight just how dire things are.ReplyDelete
The psychiatric lobby will and do carry on regardless - they can keep on spinning this out forever, virtually unchallenged.
It has been 17 years of my life and 17 years of Linda's life already - and there is no sign yet that it won't be like this for the next 17 years.
The medical profession, I have had cause to discover recently are shockingly ignorant - are almost proud , in their condescending way of not believing in ME. Disbelief is deeply ingrained at every level , right across the board.
Except - I will not stop fighting !! Neither, I suspect will you and there's many, many others fighting with us. There is our tiny flickering hope, fragile as it is. We will win, one day.
Bless you Elle, I think parents find the endless suffering of their child almost unbearable.
Sending you love,
Greg, I share your feelings. I was so excited when the paper came out, but after that when I read the news coverage I was so deflated.ReplyDelete
Right now I am really desperate and I sometimes think it will take another 2 generations for these prejudices to vanish... but we don't have that time.
Only today I exchanged comments with a doctor on a newspaper page and he thought I should not compare MS and ME as MS was the disease with the worse consequences by far! He would not reconsider, even after I told him in detail how horrible this disease can get.
I just don't know what it is, I could never ignore someone that ill, no matter what the disease is called.
We will keep on fighting because that is all we can do, but it is hard. So hard.
Love to you and Linda.
I believe that Jodi Bassett has done a paper comparing ME and MS .
No one knows what causes MS either and it's only been recognised as a disease fairly recently - of course it too was seen as psychiatric, however the psyches and the insurance industry did not have such an invasive hold on it.
Good for you taking on a doctor, it is so important to challenge people's misperceptions.
We haven't really changed things in ME , however I strongly feel we are approaching a tipping point. What is really needed is for people with ME to actively challenge the lack of provision of a biomedical service , that's what we've been doing and making a lot of progress to the extent that out PCT accepts the need for a biomedical service.
The trouble is the almost total lack of experienced clincians. This is shameful !
We all just have to keep on hoping and keep fighting, that is so important, if we are to get truth and justice . It will happen, just as it did in MS.