Why is the UK so barbaric when treating ME

[maybe some day]

I've been reading a few posts here and and also in the in memory of forum. I don't get it, I don't understand how these people are treated so cruelly. Here in the US, I don't hear about that as much if at all, including Canada.

Is it because of their socialized medicine? Not to mention coming to your house and institutionalize someone? I cant wrap my head around it

 

[Dolphin]

I've been reading a few posts here and and also in the in memory of forum. I don't get it, I don't understand how these people are treated so cruelly. Here in the US, I don't hear about that as much if at all, including Canada.

Is it because of their socialized medicine?

I think this could be an issue. There were and are lots of CBT/graded exercise therapy clinics: if patient preference was important (which it necessarily is if people have to pay something), the number of CBT/graded exercise therapy clinics would be a much lower percentage of what was offered.

 

[Hip]

Here in the US, I don't hear about that as much if at all, including Canada.

The US has a dozen or two famous ME/CFS specialist doctors who have a very good understanding of ME/CFS, and will provide ME/CFS treatments (like antivirals and immunomodulators) that can make a major difference in symptoms for some patients. The UK has almost no doctors like that, in part perhaps due to the more restricted clinical freedom in the UK (it seems even private doctors in the UK, who are not part of the NHS, are still limited in what they can prescribe: Dr Myhill is private, but was prohibited from prescribing Valtrex for ME/CFS).

However, outside of those famous ME/CFS specialists, it would be interesting to hear what sort of experience ME/CFS patients in the US have.

When I was in contact with the husband of a neurologist from a major teaching hospital in the US, I discovered that this neurologist viewed ME/CFS as a psychiatric "all in the mind" condition, and she did not like dealing with ME/CFS patients at all, not only because she viewed the disease as "all in the mind", but also due to the fact some ME/CFS patients do have mental health comorbidities as well.

And apparently all her colleagues also held the same psychiatric view of ME/CFS. So I wonder what type of treatment you would get if you went to such a hospital?

But at least in the US you do have good ME/CFS specialists available.

 

[me/cfs 27931]

But at least in the US you do have good ME/CFS specialists available.

Unless you have very good insurance or can afford to see a specialist on your own, you may not be any better off in the US.

While the US may have specialists, there are not very many of them. The waiting list at the Stanford clinic, last I checked, was a year.

 

[maybe some day]

Im an hour away from OMF. I have an HMO, so its useless. I dont feel Im missing much anyways by not going to specialists.

 

[lafarfelue]

From reading about those with chronic illnesses in the US, it seems that many many people fall through the gaps due to lack of resources or accessibility, but that it is underreported. These tend to be people who are not treated much/at all for their chronic illnesses.

In places where there is socialised healthcare, there seems to be an increased reporting. These tend to be people who experience malpractice as a result of being forced through one system. It appears to be greater in the UK over Canada due to what system is in place (eg. due to both political and economic influences... Brexit govt, anyone?). My aunt is severely disabled (not with ME/CFS), in care/a home in the UK, and I've been watching the political goings-on over the years. It's very disheartening.

 

[maybe some day]

From reading about those with chronic illnesses in the US, it seems that many many people fall through the gaps due to lack of resources or accessibility, but that it is underreported. These tend to be people who are not treated much/at all for their chronic illnesses.

In places where there is socialised healthcare, there seems to be an increased reporting. These tend to be people who experience malpractice as a result of being forced through one system. It appears to be greater in the UK over Canada due to what system is in place (eg. due to both political and economic influences... Brexit govt, anyone?). My aunt is severely disabled (not with ME/CFS), in care/a home in the UK, and I've been watching the political goings-on over the years. It's very disheartening.

Good point

 

[nanonug]

However, outside of those famous ME/CFS specialists, it would be interesting to hear what sort of experience ME/CFS patients in the US have.

Norman Levin was my doctor when he was practicing in Virginia. He had a treatment protocol for CFS that included many of the things that I still use today. In addition, his clinic offered IV infusion including glutathione, methylcobalamin and magnesium, among others. I also did heavy metal detox there. He's now in Colorado at this clinic: https://www.drbmc.com/meet-our-doctors

 

[Dolphin]

In places where there is socialised healthcare, there seems to be an increased reporting. These tend to be people who experience malpractice as a result of being forced through one system. It appears to be greater in the UK over Canada due to what system is in place (eg. due to both political and economic influences... Brexit govt, anyone?). My aunt is severely disabled (not with ME/CFS), in care/a home in the UK, and I've been watching the political goings-on over the years. It's very disheartening.

CBT/Graded exercise therapy were just as dominant during the 2000s (i.e. pre-2010) when Labour were in power in the UK.

 

[SilverbladeTE]

Politics, money, the Establishment...all drifting further and further away from sane, reasonable Democracy etc.

As the system has got more and more remote and untouchable, as politics is gerrymandered and bought out so those in the Cabinet (regardless of party) are bought and paid for

And many hideous crimes are utterly whitewashed and covered up....

 

[Sushi]

But at least in the US you do have good ME/CFS specialists available.

However, outside of those famous ME/CFS specialists, it would be interesting to hear what sort of experience ME/CFS patients in the US have.

Here is my experience in the US. Because we have some good specialists, if you find an open-minded doctor who really wants to help, they will sometimes prescribe therapies and medications based on the experience of those few good specialists and on the published literature. This means selecting your local doctor very carefully. I have been fortunate this way and, wherever I have lived, have found a sympathetic doctor who was willing to prescribe medications and lab tests that were recommended by specialists. Of course this is mostly for symptom relief but that itself is significant. For me, innsurance has paid for most all of this. I also have a local cardiologist who is quite familiar with ME/CFS and dysautonomia and she also supports me and tailors the treatment she gives me in light of ME/CFS.

From reading about those with chronic illnesses in the US, it seems that many many people fall through the gaps due to lack of resources or accessibility, but that it is underreported. These tend to be people who are not treated much/at all for their chronic illnesses.

A lot of this depends on your insurance. If you are fortunate enough to have government insurance (like I do), most any chronic illness I might have would be covered (well, not most specialist for ME/CFS as most don't take insurance). Private insurance coverage varies a great deal though--in both price and coverage. You need to live in a good sized urban area though to have a choice of specialists.

 

[lafarfelue]

CBT/Graded exercise therapy were just as dominant during the 2000s (i.e. pre-2010) when Labour were in power in the UK.

Sure. And you'll note that UK's govt(s) have grown increasingly conservative, including fiscally. That's what I mean.

 

[taniaaust1]

Not just treated barbarically in the UK but also in many other parts of the world including Australia where people with ME/CFS can be kicked out of hospital and left without support when they cant even walk .. as our government does not recognise this illness. Im an Australian fighting this currently throu the courts re discrimination to have it recognised.

You "can" be denied even symptom treatment for ME/CFS in Australia. I couldnt even get a drug for severe insomina for years cause the insomina was caused by ME/CFS. It wasnt till i got to the point where I went FIVE days with no sleep at all and was halluncinating due to lack of sleep did a doctor finally prescribe me the drugs I needed for sleep. And when I had severe pain and fibro.. I couldnt even get treatment for that. Cause I had ME/CFS they ignored EVERYTHING for years

 

[lafarfelue]

Not just treated barbarically in the UK but also in many other parts of the world including Australia where people with ME/CFS can be kicked out of hospital and left without support when they cant even walk .. as our government does not recognise this illness. Im an Australian fighting this currently throu the courts re discrimination to have it recognised.

Yes absolutely. I'm in Australia too, and was lucky enough to a) have a GP who believes in ME/CFS, b) be close to one of Australia's limited number of CFS specialists, and importantly c) be able to afford to see that specialist privately (not through the public healthcare system).

I tried the public system here in VIC, and it was abhorrently slow and behind in treatment program. It didn't cater to individuals, it was though people were simply churned through a one-size-fits-all programming. Even when I thought I'd opted out of it, they kept signing me up for GET/CBT assessments and courses. While they said early on that they wouldn't force me to do anything or more than I could, they didn't have anything else to offer either. The people I know in Australia with ME/CFS basically make do as best they can, and these are all people in big cities. I hate to think how ppl in regional areas cope.

I'm super bummed that the only politician who championed ME/CFS to the Australian govt resigned. No other pollie has taken that mantle (yet?). There needs to be bigger positive changes for ME/CFS here too.

 

[E.man]

In regional Australia there is very little, as mentioned above.
My GP who does recognize ME sent me direct to local hospital from her practice who then ignored me. Two page written statement got me a spoken 'apology'. Should have got it in writing but didn't think of it.
Social security in the way of Centrelink does not list it as a reason for illness or disability.
The new national scheme for helping disabled, the NDIS does not list it either but might consider it for the next review.

 

[outdamnspot]

In Aus. Can confirm there's no real help, especially when you have no money. Last week, my GP said he thinks I'm ready for a fulltime job (note: I've been completely bedridden for 3 years).

 

[SilverbladeTE]

Sure. And you'll note that UK's govt(s) have grown increasingly conservative, including fiscally. That's what I mean.

it's not really "Conservatism"
I mostly disagree with conservative view points (but not on all things)
however, what we really have, is...greedy, selfish, small minded, short-term driven, opinionated, bigoted, treacherous, selfish, hateful, SCUMBAGS using the "cloak of Conservativism", as they have throughout history, to take power.

the combined effect of this is "corporate fascism". not the same thing as Germany went through, but the same forces that put Hitler in power to enact their goals
Nazis were a facet of the time sand unique culture, so, today, the scumbags use other means, ones the "sheeple" won't se as a threat until to late.

in fact many of the rats in power don't see this, or where it leads to, they are just so purblind and selfish they eagerly follow the agenda laid out for them.
Consider how the financial world has gone as an example, with a great many of the stock market etc traders becoming addicted to a lifestyle of obscene excess, becoming addicted to steroids, cocaine and £10,000/night hookers (and that is known fact and part of what led to the financial meltdown of 2008)

this may not seem linked to M.E., but it IS
the rich and powerful want excuses to not evade paying ALL taxes...if you make the disabled "Undeserving"...why pay to keep them alive?
it gave them a crack, a point to hammer a chisel in and start destroying the welfare systems of the West.

idiots were conned by media owned by monstrous "Moghuls" into supporting the dismantling of the very services which kept THEM and their families alive
while the rich used our nations' wealth as the ultimate "piggybank" and had the gal to decry that "aiding thre poor is Socialism and bad!"...while literally looting our countries' wealth to support THEIR obscene, broken and ruinous lifestyles and incompetent businesses.
remember they sold off our gold reserves, amongst many other things?

The Science Media Centre is a tool used by such people, just one of many.
big con game to destroy Democracy, concern and support for others, the Rule of law etc.
those who recall the horrors of WW1 are gone, anyone noticed the "retconning" of how that obscenity is being written by the BBC and others?
Nearly al the WW2 survivors are gone, and long gone from politics, so, the rats have snuck out and stolen their places.
Kennedy and Khrushchev had scene the horrors of war and tried to stop things getting worse (which was why they got destroyed by the "hawks" in their own countries but they did have great many useful effects, including preventing World War 3)...anyone think the chicken****s and loons of today have such foresight and courage?

some of it of course started with sheer rampant stupidity and arrogance of many in the medical profession...but once you spot a weakness, you can exploit it.
*takes out a chisel...tap tap, tap tap...CRACK!*

 

[Skycloud]

One point about the NHS - though there is a lot wrong in the UK for people with ME, our socialised NHS system is good generally (and very often very good indeed, first class) when funded as it should be. The NHS is cost effective. The current and last government have a policy of austerity, which is damaging. (It's true to say that the NHS generally really struggled the last time this party was in power in the 80's early 90's because of funding decisions.)

I'd also add that whilst the bad things you hear about the treatment of people with ME are true, there are many pwme who have, like me, doctors who are supportive. I think of him as 'lovely but useless' when I'm being critical, but he's thorough and a good all round GP. He does his best in the system he has. I have always been referred for specialist help when the symptoms indicated it. He does his job.

From what I've read on forums there does seem to be what we call a 'post-code' lottery in the UK - some parts of the UK seem to be a lot worse than others.

Our system will only fund evidence based treatment. If the research is not sufficient the NHS won't fund a treatment. We need more and and higher powered biomedical research before drug treatments will be accepted here. Cost may be a factor here, but it needn't stop people with sufficient resources if the research base for bio-medical treatments in ME was sufficient. So, right or wrong, that's one reason why we can't have some of treatment that some people in the US can access.

I think too there is insufficient testing and differential diagnosis for pwme. I don't know how that varies in different areas, or how it compares with other countries.

Evidence based medicine has been perverted in the area of ME/CFS, as anyone on the forums can learn quite quickly, by a group of shoddy researchers (that's me being nice) who are well connected having managed to dominate the field.

The shoddy research suits a political drive to reduce spending in the UK that has been going on for decades.

I also think a lot of UK medical practitioners assume that the checks and balances have worked as they should and that the official info and guidelines are reliable.

I'm optimistic about the UK changing, and there's a lot of hard work being done to make this happen, but for now, yes, there certainly are some very awful cases, and a lot of people with no effective treattment.

 

[blueberry]

Sounds just as bad in Australia as it is here, sorry guys. I also understand that folks in the US will have different experiences depending on their insurance and where they live. What frustrates me here in the UK is firstly that patients aren't offered access to tests that would give an idea of what is actually going on in the body. I see a lot of discussions on this forum about methylation cycles, thyroid hormones, NK cells, MAST cells....... all things that we have no way to have investigated here in the UK, as far as I am aware. It's almost as if the medical profession in the UK don't believe there is a physical basis for the condition (written with extreme sarcasm). The second frustration is that the "treatment" offered at UK clinics seems to me to be the watered-down offspring of GET; first they talk about pacing, then the next step is gradual exposure to exercise......they moderate the language used these days and it's all about "at your own pace" but if it walks like a duck...... again, little or no discussion of the physical basis of the illness. Once you have been referred to the "experts" at the CFS clinic, the GP can just shrug and say there's nothing more they can do. One could suspect wilful ignorance..... but I suspect GP workloads and a criminal lack of education on the condition add to the picture.The upshot of this dire situation is that mild-to-moderate suffers have to muddle through as best they can, whilst for severe patients......well, to be honest, I can't think of any situation more terrifying than to be severely ill and rushed to hospital only to be met with blank faces at best and disbelief at worst. The recent tragic deaths in the UK have just brought this home to me so hard. I am about as far from a conspiracy theorist as you will ever meet, but in the case of the medical profession's attitude towards ME/CFS it really seems quite an apt assessment. To look the other way, to make no attempts to familiarise themselves with the substantial amount of papers from around the world that demonstrate facets of the biological aspects of the condition......sorry, running off a bit here, I am just soooo angry about this situation and that poor young girl........if I'm lucky enough to make my way back to remission a second time, I have promised myself that I will make it my busines to campaign like crazy. Just you wait until I can get off this sofa............

 

[msf]

I think it is partly the way the health care system works, in that everyone gets the same treatment, and partly the xenophobia/jingoism I have noticed in UK doctors. They think anyone practicing medicine on the continent is suspect, overlooking the fact that most of those countries get better results in terms of patient outcomes than the UK. Finally, I think healthcare is underfunded here, so people are probably happy to believe that there isn't much you can do for the poor chaps.