Discussion in 'General ME/CFS News' started by Jenny, Oct 16, 2011.
I knew the Bowen Institute sounded familiar.
Good news - suspension order replaced by conditions:
Thanks for posting that info Jenny, lets hope the conditions aren't too restrictive.
I'm so sorry this fine, caring and highly knowledgable doctor has had conditions imposed upon him that will probably stop his wonderful work from continuing, whilst the UK psychiatric profession continues to make a mockery of our illness by grabbing all the research and treatment funding to implement their dangerous nonsense.
The psychiatric profession in the United Kingdom is an absolute bore. Try real medicine you whimps. Ah - 4 Docs in my family who actually believe their patients.
i just got around to reading thid thread and the associated docs.
what is the chance that the prof and/or docs who reported him to the GMC were in some way involved with the whole psychological treatment approach in the UK?
this is exactly why my GP is too afraid to actually help me and run some appropriate tests. its crazy.
I've only noticed this thread thanks to you snowathlete, but I'm glad I did.
I can't help but wonder if the GMC are using these bullying unethical tactics to put off any doctor from taking ME seriously and actually trying to help us.
It is certainly not in the interests of many a humungous ego that the physical nature of the disease be too widely known. Tests for viruses and mito and mast cell activation coming back positive is such a terrible embarrassment for those trying to pretend we all have "false illness beliefs".
Imcompetence and nest feathering rules.
its so wrong to deny testing. Even if they dont believe in ME im sure there are some people wrongly diagnosed with ME and have some other possibly easily treatable condition. I would say that those doctors would be failing their duty of care not doing testing and possibly finding and ruling things out.
I think denying testing is also a money saving exercise for the NHS. This is a problem with state run health systems.
Here in the UK, it costs the NHS money for every test that is given. So it is in the interests of the NHS to minimise testing, in order to conserve their funds for other patients.
Whereas in the US, with testing labs and doctors being private sector, for profit operations, it is their financial interests to maximize the number of tests that are given to a patient.
So it seems to me that this is one of the advantages of having a for profit rather than state run health system like the NHS: in a for profit system, you are encouraged to see specialists and gets tests done, as this makes people money. In the NHS, you are often discouraged from seeing specialists and getting tests done, as this costs the system money.
One GP I saw in the UK about 7 years ago actually confided in me that, at that time, there was a special secret drive from the UK government to save money, and that all GPs were asked not to send their patients to specialists if at all possible, to cut back on costs (it costs the NHS on average £25 for each patient's visit to a primary care GP, but around £400 for each visit to a specialist doctor). I don't know if this policy is still in place now.
As the US introduces Obamacare, I do hope that the country does not start going down the route of cutting back on testing and medical care.
I hope so,too. But overall, I have been impressed with ObamaCare. Right now doctor's sometimes order unnecessary tests to avoid litigation. Sad but true. I don't know what the answer says but I definitely lean towards ObamaCare and have know an least three people who have benefited from it.
Right now between 85-90% of bankruptcies, are from medical debts as one of the primary reasons people declare bankruptcy. That includes me and was something I would have never imagined could happen after 25 years making a pretty decent salary. Unfortunately, I kept thinking I would be able to get back to work.
ETA I forgot to add to the above that one person was able to have her insurance cover her 21 year old daughter and two with what would have been considered preexisting conditions.
The cutbacks for govs to save money on medical costs are happening every where.
Here in Australia, at least in my state (I dont know about the others).. there has been introduced this year, targeting the "integrated doctors" (which many of us see), a new thing saying they can only order a few blood tests at a time (or there is a charge for the tests which usually dont cost and our medicare usually covers).
This new rule is being a hassel for those like myself who often need a lot of tests done due to so many abnormalities in previous tests, need to monitor how treatments are going etc. The lot of bloods I had taken yesterday, doctor didnt know if they will end up being charged or or not due to the new rule. So we are just currently hoping they wont be veiwed as her doing to many at once.
Per capita health spending (2010) US - $8,362 widely recognised as 'unsustainable' - UK - $3503 - current budget requiring 'efficiency' savings of £20 billion 2011 -2014.
Despite having a per capita health spend more than double that of the UK, the US actually has poorer health outcomes. Overtesting and over investigation is (with consequent poor health outcomes) is a recognised problem of the US system http://health.universityofcalifornia.edu/2012/08/16/has-defensive-medicine-led-to-overtesting/ It's absurd to believe that curent US practice can continue unchanged - or that an appeal for unlimited testing in the UK is going to be met with anything but derision. If M.E/CFS patients want the standard suite of tests expand (and there's clearly some basis for that) then a very cogent argument is going to have to be made, centred on the need to avoid misdiagnosis. In fact the greatest need may not be with substantially wider range of tests but with a standard of more frequent testing to rule out illnesses which have developed following diagnosis with M.E/CFS.
Health Funding data: http://data.worldbank.org/indicator/SH.XPD.PCAP
Assuming that is true, it may not necessarily be a reflection on the health service, but may reflect other factors such as diet and lifestyle.
I can't really see that clinical over investigation can be considered a problem. Better to have lots of information that ignorance of all the various biomarkers.
The impression I get is that much of the medical testing and investigation in the US has a pioneering spirit — performed as a scientific exploration, by doctors that have a great deal more clinical freedom that do UK physicians. UK GPs are always chastised by the General Medical Council whenever they try something even slightly experimental, like giving B12 injections to ME/CFS patients.
Where are the brilliant pioneering ME/CFS researcher/clinicians in the UK? OK, we had the late Dr John Richardson, who did all the initial groundwork investigation connecting enteroviral infections to the subsequent development of ME/CFS. But we are terribly short of researcher/clinicians like Drs Chia, Peterson, Cheney, Lerner, Klimas, Lapp and Enlander.
Now I know the US population is about 5 times larger than the UK's, and so statistically you would expect the US to have 5 times as many such doctors. But we don't even have one specialist ME/CFS doctor that has Chia's drive and research output.
And if you take the whole of Western Europe, which has a comparable population to the US, there are still very few specialist ME/CFS researcher/clinicians. Only De Meirleir, as far as I know.
My view is that this shortage of ME/CFS researcher/clinicians is due to structural factors in the way European versus US health systems are set up.
Prevention, health education and public health interventions all contribute to a nation's health outcomes, just as much as the delivery of treatments. The reality is that the UK has for over 50 years consistently delivered better health outcomes than those of the US, and achieved that for a far smaller per capita spend. Of course life style, environmental and demographic differences have impacts - but the strength of a health care system is how it responds to those differences. Whether, for political or philosophical reasons one considers one system to be better than the other, costs in the US and the UK are driving change and there is simply no basis to believe that the UK will move to a US type model, because to do so would cause the vast majority of the UK population would lose out - despite hypothetical gains for some minorities (wealthy/well insured M.E/CFS sufferers ?).
Well you'd have to expect the US to get something for the $5,000 per person per year it spends more on health than does the UK citizen. Though frankly if all that is on offer is that list - I'd want my money back.
Service level funding and research funding have little relationship. Research funding of all science in the UK is woefully below that of the US, however despite the far better research environment in the US, investment in M.E/CFS research has still been abysmally low. Where is the replicated research of these mythically able researcher/clinicians ? If there is one thing missing from M.E/CFS research it is funding for work carried by pre and post doctorate researchers - the young bright minds that bring new thinking. That 'new thinking' is not going to come from a whole army of near retirement clinicians operating out of private institutions, putting out the occasional paper that no one outside of a self referencing clique, takes seriously.
That is certainly very, true. I've read good reports about France in this respect, with their preventative approaches to dealing with hepatitis C infection.
And if we're are going champion the preventative approach, how about a coxsackievirus B vaccination program as an experiment in wiping out ME/CFS.
Again, very true. Nevertheless, I'd rather have a handful of ME/CFS clinicians operating out of private institutions chipping away on the scientific frontier, rather than give away ground to the backward medieval views of Wessely and his crew. The Wesselian approach of "give 'em some exercise and a pep talk" — or GET/CBT as it is otherwise known — is not only backward and lackluster, but is a testament to the way NHS is always trying to conserve funds. Exercise, after all, is very cheap.
For me it would be very disconcerting and depressing if the only available clinical approaches to ME/CFS in the world were GET/CBT. I would really feel that we were living in the dark ages if it were not for these few ME/CFS clinician/researchers in the US — albeit near retirement in some cases — holding the fort on the biochemical, immunological and neurological approach to ME/CFS.
Of course there are good non-clinician ME/CFS researchers in the US, Canada, Europe, Australia and elsewhere, but these are not generally point of care doctors. So for the here and now, it is only these handful of primarily US clinician/researchers that are saving us from receiving medieval medicine.
No, no no, NO we do not need more clinicians/medics - we need real scientists - ones with PhDs who know how to perform proper research.
The UK NHS is great if you have a recognized condition that gets the attention and funding it deserves. Diabetes for example. But, if you have an illness like ME (but not just ME there are many other people with difficult to treat, little understood illnesses) then you are screwed. You cannot access anything because unless it’s in the NICE guidelines, you cannot have it. Worse still, one of the main reasons why NICE was set up as it was, is so that the UK government cannot be sued by patients like us for being neglected. The government is simply following someone else's guidelines. It has taken them out of the equation.
Furthermore, doctors are so reluctant to prescribe or refer you because of the cost and they are under pressure not to spend, and the pressure on them to make financial rather than clinic decisions is increasing. This also impacts treatment like that for ME/CFS. CBT and Pacing is cheap cheap cheap. Even if there was a better option, it would be resisted because of the cost and the arguement that it migth get us back into work saving the government money does not work because the people making the decisions within the NHS dont get more money for that. All it does is cost them to provide the treatment.
As has already been said and shown, doctors who try to prescribe outside of the NHS guidelines get shot down. It doesn’t matter if they are right.
Additionally, though many people still don't realize it, the NHS is being privatized.
I think you've hit the nail on the head, Snowathlete.
The NHS practices evidence-based medicine, which works very well for recognized conditions, but is a disastrous catch 22 for little understood illnesses like ME/CFS.
And not just disastrous because it offers no treatment for little understood illnesses; but even more disastrous because there are no official routes for dealing with these badly comprehended diseases, so that what actually happens is that they are ignored, or air brushed out of the picture using nonsense psychosomatic explanations, because doctors have no official evidence-based channels with which to "process" these patients; as these patients then become invisible to the system, the system does no further research or investigation.
I'm pretty sure it was "evidence based medicine" that was behind the resurge in using electric shock treatment.
It was even evidence-based reasoning that it was ever tried in the first place...
It had been noticed that animals convulse when given electric shocks - and elipepsy also resulted in convulsions.
So they decided to treat "like-with-like", and gave elipeltics electric shocks to cure them, then they decided that because the epileptics were happier afterwards, that ECT should be used for depression. (I think this was going back to the 1800s when it was first used) but that did not stop it getting hauled out again in the more recent 1980s and used.
Because it was "evidence-based".
Evidence is fine - but it MUST be backed up by scientific validity. A causal connection must be made.
Do you mean electroconvulsive therapy? I think ECT is a much safer technique than it used to be. In the past, many people were cabbaged by ECT due to the fact that some individuals have thinner skull bones than others, and in these people, too much electric current would flow through the brain.
The most ghastly story I heard from the annals of grisly medical practices was the operation for some mental health condition (can't remember which) that involved poking a metal rod through the thin orbit bone at the rear of the eye socket, and once the rod entered the brain, giving it a nice good shake around to destroy the brain tissue behind the eyes. This one was still used up until not so many decades ago.
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