Guardian Article - ME is still woefully misunderstood by our health and welfare systems

[Bob]

ME is still woefully misunderstood by our health and welfare systems
We got some help after my husband was diagnosed with ME but that soon evaporated. Friends and family had to step in.

http://www.theguardian.com/commentisfree/2013/aug/08/me-misunderstood-health-welfare

The Guardian.
Lia Leendertz
8 August 2013

My husband got a diagnosis of his ME (Myalgic Encephalomyelitis) early on, something of a rarity in a landscape populated by disbelief and dismissal. I didn't have the years of wondering about this mysterious exhaustion and I clearly remember the relief: someone knows what is wrong and can start to treat it. I was placed in the role of carer at the same moment that I thought we were saved. We'll get support and help. Hooray! Excuse me while I take a weary and knowing side glance to camera.

....cont....

http://www.theguardian.com/commentisfree/2013/aug/08/me-misunderstood-health-welfare

There are 62 comments after the article, so far... and counting...

 

[Kate_UK]

There is an excellent comment there that should be recommended by us all, so it goes to the top! It's this one....

There is a huge opportunity to get biomedical research going in this country by donating to support a UK clinical trial of the immune drug Rituximab for ME. A trial in Norway of this drug two years ago was so successful that the Norwegian government apologised to its ME patients for how it had previously treated them.
If you have ME, or care about someone who does, or see the terrible neglect that people with this devastating disease have had to bear and want to do something about it, please donate to the trial and tell others, especially those with ME, about it.
It's clear from the response of patients in the Norwegian trial that there's an autoimmune component to ME and this is a crucial breakthrough.
Find out more at http://www.ukrituximabtrial.org

 

[Bob]

There is an excellent comment there that should be recommended by us all, so it goes to the top! It's this one....

Here's the direct link to that comment, in case helpful:
http://www.theguardian.com/commenti...misunderstood-health-welfare#comment-25850404

 

[Valentijn]

Very impressed by the comments so far. Only one comment about us being psych-threatening nutcases

 

[Bob]

I've emailed the Guardian to ask them to remove the weblink to the Lightning Process. I don't want it to appear as if the Guardian are endorsing or promoting the Lightning Process.

 

[Bob]

Only one comment about us being psych-threatening nutcases

I hope we're not losing our mythical status as being the most dangerous patients on the planet!

 

[biophile]

As ironic as this may sound, the PACE Trial may have been a part blessing in disguise against the hidden agenda to goad CFS patients back into work prematurely. Part funded by the Department for Work and Pensions, and operated by those with declared conflicts of interest involving the insurance industry, you can be certain that if the PACE Trial demonstrated anything more than it did for CBT/GET (i.e. no improvements to employment outcomes, sickness-benefits, insurance payouts, total usage and costs of various services, etc), the situation now would be even a few shades darker.

 

[Sasha]

There is an excellent comment there that should be recommended by us all, so it goes to the top! It's this one....

You're too kind! That's my comment.

I started a thread on this earlier suggesting that other people use this (and future online news stories about ME that allow comments) to boost awareness of fundraising for the Rituximab trial. Please do join in on there, folks! The more mentions, the better - I said a bit about how best to go about this on this other thread:

http://forums.phoenixrising.me/inde...ab-trial-mentioned-on-guardian-website.24641/

 

[Sasha]

There is an excellent comment there that should be recommended by us all, so it goes to the top! It's this one....

BTW, unfortunately the only way of sorting comments appears to be by 'most recent' or 'oldest' - liking it doesn't seem to send it to the top of anything, unlike a lot of these comment pages. Thanks anyway, though! Doesn't hurt to show approval of a comment about the trial.

 

[user9876]

I thought this was an interesting comment about the institute of psychiatry at kings.

http://discussion.guardian.co.uk/comment-permalink/25840694

Basically it said CBT offered to help deal with chronic illness + pacing which is a very different message from that in pace. Then talks about the head psychiatrist saying its all in the mind including symptoms that were later attributed to something else.

I have been doing the ME/CFS programme at the Institute of Psychiatry at King's which is Simon Wessely's territory. For me, it has consisted of CBT to help me deal with having a chronic illness and support with pacing. And for me, it's been very helpful.
Except when I dealt with the psychiatrist in charge of the unit about debilitating nausea over 16 years. He insisted it was psychiatric and that the same personal weakness that caused me to not get better from ME/CFS was causing that. It was all in my head and I must just accept it and be quiet about it.
Turns out when my GP sent me to a gastroenterologist they were able to identify it as bile salt malabsorption due to having my gallbladder out 16 years earlier. Took them about 10 minutes and the gastroenterologist was so angry when I said I'd been told it was all in my head, he wrote to the psychiatrist.

 

[alex3619]

As ironic as this may sound, the PACE Trial may have been a part blessing in disguise against the hidden agenda to goad CFS patients back into work prematurely. Part funded by the Department for Work and Pensions, and operated by those with declared conflicts of interest involving the insurance industry, you can be certain that if the PACE Trial demonstrated anything more than it did for CBT/GET (i.e. no improvements to employment outcomes, sickness-benefits, insurance payouts, total usage and costs of various services, etc), the situation now would be even a few shades darker.

I agree. I also think that its a Rosetta Stone, exemplifying everything that is going wrong in psychogenic medicine. Thats why I am working on my book. Its not just the PACE trial that does this though, their main papers or supporting documentation. Its all the press releases, press commentary, commentary from other psychiatrists, media coverage, etc. There is a pattern of distortion, hyperbolic and emotional rhetoric, ignorance of facts and reason, and scapegoating.

if I were to make a linear graph of issues, which is not really accurate as perhaps a Venn diagram would be better (how do you combine Venn diagrams with nonlinear directed connection? - I have some ideas, more later) it might look like this:

PACE -> Psychogenic Medicine -> Biopsychosocial -> Medical Insurance Industry -> Politics -> Economic Theory (efficient markets, economic rationalism)

There would be side arrows going to Evidence Based Medicine, and other things too.

 

[biophile]

After skimming the comments, I noticed that a few have pointed out that the DWP is ultimately to blame.

Last year there was an interesting commentary article which outlined this:

"Atos is doing a good job – as the government's flakcatcher (Don't be surprised by the controversial company's Paralympic sponsorship. Outsourcing unpopular decisions is now policy)."

http://www.theguardian.com/commentisfree/2012/sep/05/atos-the-government-flakcatcher

I also found this:

Fraud and Error in the Benefit System: 2011/12 Estimates (Revised Edition)
https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/222892/fem_1112.pdf

p2: "0.7%, or £1.2bn, of total benefit expenditure is overpaid due to fraud."

Even if the proportion is relatively low, that is a fair amount of coin, and obviously an undesirable burden on any hurting economy, so the government are looking to reduce it in times of need. After all, they will not go after the banker scum angels, or the 30,000 politicians costing £500m a year (2009 figures), so might as well target the genuinely disabled scrounger hordes or the "fake disabled" who are supposedly crippling the entire economy?

However, there are lots of different benefits. Most of the fraud money is from Income Support, Jobseeker's Allowance, Pension Credit, and Housing Benefit. Here are the figures for two other categories relevant to ME/CFS patients.

p13: Table 2.1: Estimated overpayments in 2011/12...

Incapacity Benefit
Expenditure: £5.0bn
Fraud: 0.3% (£10m)

Disability Living Allowance
Expenditure: £12.6bn
Fraud: 0.5% (£60m).

FWIW, Australia went through a "welfare to work" push several years ago, albeit without quite the same degree of ATOS militancy, and it basically made no difference. It is not that there is no fraud going on, but that the notion of hordes of fake disabled suckling Britannia's teet dry is misguided. The vast majority of people on sickness welfare obviously need it, and these intensified crackdowns (over the usual procedures) are generating an enormous amount of stress and suffering. There is a serious risk of many genuinely disabled people being inappropriately forced off benefits, and although the UK government may save a little money on paper, the cost for all this will hit society or the economy in other ways.

 

[alex3619]

Given the social upheaval and other issues, I contend that any financial benefits of cracking down this way to catch such a small percentage of fraud will cost much more than it saves. Its spending a pound to save a penny. This is particularly the case when secondary impact on the disabled is considered, with increased medical costs and other costs to society. From a cold economic perspective benefits are appropriate because they save money - its cheaper to pay someone a meager pension than to have all the costs associated with disabled and dying borne by some other part of society.

Getting rid of tax loopholes in the UK, especially those exploited by big business, will save far more.

 

[Little Bluestem]

Good for whomever 'Tumbling' is for getting this published today.

ETA: I loaded the page three times and it never showed me the comments.

 

[ukxmrv]

The actual online is awful. It claims that someone got in the UK a diagnosis of "Myalgic Encephalomyelitis" early on. There are very few doctors left in the UK who are interested in the difference between CFS and ME, so we are supposed to believe that by some miracle he saw one of them?

The only symptoms described are exhaustion and excessive sleeping - that's it. Sleeping and exhaustion would get one of diagnosis of what exactly? Oxford CFS?

He is now "much better than he was" through the Lighning Process. Amazed he could do the course given his sleeping and exhaustion but he did manage to get there and sit up and stay awake for how many days? and his own wife is judging him as much better. That he isn't back to work is a red flag. Is his wife colluding in the Lighning Process and not letting him "do ME"?

This is a huge slap in the face for the 25% group and people with severe ME.

 

[Little Bluestem]

{Sigh} It seems we can't win for losing.

 

[Firestormm]

The actual online is awful. It claims that someone got in the UK a diagnosis of "Myalgic Encephalomyelitis" early on. There are very few doctors left in the UK who are interested in the difference between CFS and ME, so we are supposed to believe that by some miracle he saw one of them?

The only symptoms described are exhaustion and excessive sleeping - that's it. Sleeping and exhaustion would get one of diagnosis of what exactly? Oxford CFS?

He is now "much better than he was" through the Lighning Process. Amazed he could do the course given his sleeping and exhaustion but he didn't and his own wife is judging him as much better. That he isn't back to work is a red flag. Is his wife deluding in the Lighning Process and not letting him "do ME"?

This is a huge slap in the face for the 25% group and people with severe ME.

I can see where you are coming from. Surprised others didn't pick this up as the author as prompted to write the article by someone in 25% Group. Bob is attempting to get them to remove the sales pitch link; but can we really slam others experiences? There are many many many things that desperate people find 'helpful'. Only way to properly explode the LP is to subject it to science. Not that I am suggesting for a minute this is what Esther is doing: I honestly can't remember what that child study is all about or how it is structured. But, until such time as something better defined by way of actual treatment comes along - we are where we are. Sharing experiences and perhaps we might give this lady a break? It is a true mark of desperation in my mind that anyone is driven into the arms of such practitioners: but that's just me

 

[Firestormm]

Valentijn did you really mean this:

t is mostly diagnosed by exclusion, but if you actually have ME, it should include "post-exertional malaise" as described in the Canadian Consensus Criteria and the International Consensus Criteria.
Unfortunately England has the worst possible definition for CFS, which is really just chronic fatigue.

 

[Firestormm]

Sorry. I still can't edit my posts and I am not the only one. Some system crash thingy happening to a select few I believe

 

[Valentijn]

Valentijn did you really mean this:

Hopefully it's clear that I don't think CFS is just CF, but rather that the definition of CFS in england is CF.

I can't edit it, so added another comment clarifying that