Article: UK Govt Turns New Leaf ? (Why the UK Loves ME/CFS More (!) )

Article: UK Govt Turns New Leaf (Why the UK Loves ME/CFS More )

You can view the page at http://forums.phoenixrising.me/content.php?528-UK-Govt-Turns-New-Leaf-(Why-the-UK-Loves-ME-CFS-More-)

 

Hi Kermit Frogsquire

RE

You mean like the Norwegian Health authorities completely changed their focus overnight? I think the problem is people settling for this kind of nonsense, Cort. We are only disappointed because there are people like you, including the UK ME charities, that let the medical establishment continue to get away with less. If we all spoke together and demanded proper research, then that is exactly what we would get. It is only because the very people suppose to be representing patients with ME are celebrating these studies, studies that are a total rip off. That is to celebrate the abuse of patients with ME.

Here, here totally agree, whos side are these so called ME advocates on, obviously the wrong side, to say that the UK loves ME/CFS more on the basis of this waste of money is quite frankly highly offensive to large numbers of sick people who have been suffering this kind of abuse for decades. I would suggest that Cort might like to look up the meaning of the word Love in the dictionary.

If the MRC wants to show that it has turned over a new leaf, it can start by releasing the information on ME that they have decided to use the official secrets act to keep hidden from the world for the next 70 years. (talk about a lack of transparency)

All this money is going to be wasted, because the MRC refuses to acknowledge the existence of ME and instead is promoting that mixed cohorts of people with different diseases all falsely labelled CFS, are an independent disease. Nobody is going to find any useful information by studying mixed cohorts, they may as well spend the money on a different illness, Oh sorry they already know that and have dedicated some of the money to studying Sjogrens.

All this is, is some UK researchers getting money out of the UK government for more waste of time crap research on mixed cohorts that will help nobody.

And now unfortunately they will be able to say that the PR site backs what theyre doing!!! Thanks Cort great help, how about consulting with the people youre claiming to represent before congratulating their abusers!

All the best

 

Hi rlc, I am particularly interested in the UK releasing data on vaccines inducing ME. From reported freedom of information act supplied transcripts, it sounds like some experimental vaccines can produce an ME-like syndrome at nearly 100%. These vaccines never made it to market obviously, but what happened to the volunteers in the vaccine trial? Are all they are being offered CBT/GET? For vaccine injury? If this vaccine information is incorrect we need to know. If its correct we need more details. Vaccine for what? What came of the investigation - was there even an investigation? There are too many secrets in the UK on this issue, and the UK is also home of much of the disinformation and bogus theories. I am not sure its a conspiracy, but they are 100% certain hiding something. It would be nice to know more.

Bye
Alex

 

The UK government despises people with ME/CFS . People are denied benefits , denied care that they need and portrayed in the press as either lunatics brandishing knives and sending death threats to scientists or lazy bone idle gits who all they need is a kick up the backside to get them back to work .

This money was supposed to be ringfenced for biomedical research into ME so why is some of it going to Sjgren syndrome ? thats not chronic fatigue syndrome and it certainly isnt ME .

why is some of the money going to psychologists ? I thought this was for biomedical research ?

The only study to be honest which I have any faith in is Julia Newton .

There is nothing here that is going to find a cause for ME . This money was supposed to be for that reason I really do feel we have been well and truly ripped off yet again .

We need to be looking at causation not single symptoms like sleep which to be honest someone with genuine ME would probably list way down on their symptom list . with pain , cognitive disfuntion , infections , muscle problems and control ranging far higher . We need to step away from 'fATIGUE ' this illness is far more complicated than mereley being a bit tired . Having a good nights sleep makes bugger all difference to my other symptoms .

Do you realise the 1.6 million actually equates to 6.50 per head per person in the UK with ME/CFS . that equates to a meal at KFC or a ticket to the cinema for fit and healthy people . or you might get 3 loaves of bread and a bit of change left over or perhaps be able to buy a piece of meat for sunday dinner though way prices are going up the piece of meat may be out of price range now .

Thats what this money eqautes to . yet how much was wasted on the pace and fine trials . millions . The pace trial is seriously flawed and should be retracted . will it be will it hell . the fine trial was a flop . All that money millions wasted and were supposed to be grateful for 1.6 million that theyve managed to share out to include psychologists and an illness that isnt ME or CFS .

How can anyone seriously think this government is turning over a new leaf . We are at the bottom of the crap pile as per usual and will remain there until the NICE guidelines are changed , theres research looking at the whole disease and causation , people are awarded the help and benefits they so deserve , the press starts reporting on ME fairly without bias and the likes of wessely and chalder are as far away from ME/CFS research as possible .

I had to log in just to express my agreement with this post, hit the nail on the head really.

 

Hi alex,
Do you have a link for this please?
http://forums.phoenixrising.me/archive/index.php/t-13342.html?
I am sure you have read the vaccine/adjuvant papers posted here a little while ago.
I tend to agree with you in that it is well known that ME follows vaccination in some cases.This alone would make our disease uninvestigatable in the UK.

Hi rlc, I am particularly interested in the UK releasing data on vaccines inducing ME. From reported freedom of information act supplied transcripts, it sounds like some experimental vaccines can produce an ME-like syndrome at nearly 100%. These vaccines never made it to market obviously, but what happened to the volunteers in the vaccine trial? Are all they are being offered CBT/GET? For vaccine injury? If this vaccine information is incorrect we need to know. If its correct we need more details. Vaccine for what? What came of the investigation - was there even an investigation? There are too many secrets in the UK on this issue, and the UK is also home of much of the disinformation and bogus theories. I am not sure its a consiracy, but they are 100% certain hiding something. It would be nice to know more.

Bye
Alex

 

Hi alex,
Do you have a link for this please?
http://forums.phoenixrising.me/archive/index.php/t-13342.html?
I am sure you have read the vaccine/adjuvant papers posted here a little while ago.
I tend to agree with you in that it is well known that ME follows vaccination in many cases.This alone would make our disease uninvestigatable in the UK.

http://forums.phoenixrising.me/show...8&highlight=behan+freedom+information+vaccine

Max's post 78.

 

''This alone would make our disease uninvestigatable in the UK''

After reading Osler's web i was made aware of the scale of denial with M.E.
Its not the news you want to be reading, but the facts speak for themselves.
I did have a Flu Jab in early 2009, i was supposed to have it in the winter of
2008 but i didn't make the appointments, but they reserved me a vaccine as i
had asthma as a child.
I got ill in summer 2010. I dunno if that's too long a period of time to develop
the illness, but if i could go back, i definitely wouldn't have accepted the jab.

 

Andrew, I wouldnt worry about the flu jab if I were you as the time elapsed is really too long.
Charles Shepherd has repeatedly said that about 10% of ME cases follow a vaccination trigger especially Hep. B vaccination. Hep. B causes prolonged immune activation. He publicised this as an interesting and relevant medical fact, but I think this connection could ring alarm bells in the pharmaceutical industry. This MAY be one reason we have had problems getting our iillness accepted and researched.
http://www.dailymail.co.uk/health/a...day-severe-reaction-cervical-cancer-jabs.html
We are discussing hypotheses here to do with research, it is not medical advice.

 

kermit frogsquire, I think, to put it mildly, that it's pushing it a bit too far to start mentioning Cort and Simon Wessely in the same sentence.... To me Phoenix Rising is the best ME/CFS blog on the webb, so once again, thanks Cort for all that you are doing for us!

According to Invest in ME the Chief Medical Officer (CMO) of England has once again declined to attend the Invest in ME Conference 2012 - either to speak at the conference or to listen to biomedical research into ME.

So, no turn-around there.

 

Professor Nutt was on BBC news this morning selling CBT for insomnia.

Is this where his MRC grant will be leading?

Participants in the CBT group spent much more time in slow-wave sleep (stages 3 and 4) compared with those in other groups, and spent less time awake during the night. Total sleep time was similar in all 3 groups; at 6 months, patients receiving CBT had better sleep efficiency using polysomnography than those taking zopiclone.

http://www.yorkregionsleep.com/down... chronic primary insomnia in older adults.pdf

CBT is now considered the most appropriate treatment for patients with primary insomnia.[10, 11, 12] Use of this therapy is based on the fact that primary insomnia is associated with physiologic, emotional, and cognitive arousal and conditioning to arousal in bed.

http://emedicine.medscape.com/article/1187829-treatment

 

Sounds typical of things here - don't investigate - this may help this or that that - no attempt to get to the root cause of the many combined problems (the whole picture) of the illness and underlying pathologies.

 

Insomnia is often the result of cognitive and behavioural problems.

It would be important that other biological causes were not just ignored for all patients who struggle to sleep, but this seems like an area (along with conventional anxiety) where CBT is most likely to be helpful.

I've known people benefit from a CBT approach for sleep (albeit primarily self-administered), and also has a medical problem which does cause sleep problems. Just because CBT for CFS is often done in such a quacky way doesn't mean that we should assume all CBT is useless.

 

I'm not suggesting all CBT is useless Esther. I use a form of thought stopping myself for insomnia which is the very technique demonstrated on the BBC show yesterday.

The point is that this budget was supposedly ringfenced for biomedical research and this study appears to have slipped in because it will be using a drug. Of course if found to effectively help with daytime functioning then no doubt CBT will be touted as a superior intervention.

But insomnia does not cause ME/CFS and this study can only be about management - not understanding the underlying biomedical issues.

 

I see Marco. I didn't take these news reports to mean that the Nutt CFS study would be focusing on CBT, so we may have been talking at cross-purposes. I also took Enid's post to be in reply to yours when it may not have been.

Maybe I was being misled by a prejudicial reaction against what could be seen as a prejudicial reaction against CBT!

 

Hi rlc, I am particularly interested in the UK releasing data on vaccines inducing ME. From reported freedom of information act supplied transcripts, it sounds like some experimental vaccines can produce an ME-like syndrome at nearly 100%. These vaccines never made it to market obviously, but what happened to the volunteers in the vaccine trial? Are all they are being offered CBT/GET? For vaccine injury? If this vaccine information is incorrect we need to know. If its correct we need more details. Vaccine for what? What came of the investigation - was there even an investigation? There are too many secrets in the UK on this issue, and the UK is also home of much of the disinformation and bogus theories. I am not sure its a conspiracy, but they are 100% certain hiding something. It would be nice to know more.

Bye
Alex

Think I mentioned this before, but during Cold War period, the three most secretive states on Earth were:
North Korea
Albania
and the United Kingdom (seriously)

Our "leaders" have been obsessed with secrecy behind layers of bureacrats and "fall guys" for 150+ years
you don't need North Korea style madness, just layers upon layers of "artificially created buffers and gate keepers" and conceited scumbags claiming "for the public interest!" and using that as an excuse to hide it all their lies, screw ups, disasters, wars, murders etc under the "Official Secrets Act"
see the Windscale fire, 1957, if anyone thinks I'm exaggerating, yes, major nuclear accident sweeps reactor material across North England, but all the meteorological data for JUST that day went missing and no one was warned or evacuated....
http://en.wikipedia.org/wiki/Windscale_fire


speaking of which still would like ot know what the Department of Social Security (pre-cursor to the now, DWP), made folk sign the Offical Secrets Act for/checked them for it, on a meeting specifically about ME back in the 80's?

 

I don't know where you come from Esther but yes I am predujiced about CBT ( practiced locally and wider as all in the mind). That is a problem for those who play games but not ME. Stick with science I suggest. I fled a hospital 10 years ago with great difficulty passing out and yet wiser than idiots around me (4 Docs) .Now where is the great CBT.

And this state of affairs is this United Kingdom once trusted. Oh and behavoiur - difficulty in finding the telephone to call a taxi, recall in everything as things spinned about me. And though much effort to speak at that time now I will.

 

Good for you, Enid!
Yes lets be prejudiced against CBT. We have reason to be!

I don't know where you come from Esther but yes I am predujiced about CBT ( practiced locally and wider as all in the mind). That is a problem for those who play games but not ME. Stick with science I suggest. I fled a hospital 10 years ago with great difficulty passing out and yet wiser than idiots around me (4 Docs) .Now where is the great CBT.

And this state of affairs is this United Kingdom once trusted. Oh and behavoiur - difficulty in finding the telephone to call a taxi, recall in everything as things spinned about me. And though much effort to speak at that time now I will.

 

Insomnia is often the result of cognitive and behavioural problems.

It would be important that other biological causes were not just ignored for all patients who struggle to sleep, but this seems like an area (along with conventional anxiety) where CBT is most likely to be helpful.

My partner benefited from a CBT approach for sleep (albeit primarily self-administered), and also has a medical problem which does cause sleep problems. Just because CBT for CFS is often done in such a quacky way doesn't mean that we should assume all CBT is useless.

Hi Esther,

Just so I am not misunderstanding you. You are acknowledging that there can be biological causes for sleep disturbance (as happens in m.e and why I believe cbt for sleep problems in m.e will have no little if any effect) and if so, treatment other than cbt should be given, but you believe that where there are no biological causes one shouldn't dismiss CBT for insomnia as it might be helpful?

If Nutt is planning to not use cbt whilst studying poor deep wave sleep in his m.e study fine. I hope he's not as will be a waste of time....hopefully he won't be....time will tell. I thought when it came to the m.e study he was researching a drug that may help to promote deep wave sleep. For the last 13 years of m.e I've dreamed vividly each night, don't like it, so I think this indicates my body does not get much deep wave sleep...

 

kermit frogsquire, I think, to put it mildly, that it's pushing it a bit too far to start mentioning Cort and Simon Wessely in the same sentence.... To me Phoenix Rising is the best ME/CFS blog on the webb, so once again, thanks Cort for all that you are doing for us!

According to Invest in ME the Chief Medical Officer (CMO) of England has once again declined to attend the Invest in ME Conference 2012 - either to speak at the conference or to listen to biomedical research into ME.

So, no turn-around there.

Very disappointing that the Chief Medical Officer has declined yet again this year to attend the Invest in Me conference. I agree no turn around there then....:-(

 

Hi Esther,

Just so I am not misunderstanding you. You are acknowledging that there can be biological causes for sleep disturbance (as happens in m.e and why I believe cbt for sleep problems in m.e will have no little if any effect) and if so, treatment other than cbt should be given, but you believe that where there are no biological causes one shouldn't dismiss CBT for insomnia as it might be helpful?

If Nutt is planning to not use cbt whilst studying poor deep wave sleep in his m.e study fine. I hope he's not as will be a waste of time....hopefully he won't be....time will tell. I thought when it came to the m.e study he was researching a drug that may help to promote deep wave sleep. For the last 13 years of m.e I've dreamed vividly each night, don't like it, so I think this indicates my body does not get much deep wave sleep...

It is really difficult to be clear here.

I've just deleted a long reply which went to OT.

This is made somewhat more difficult to talk about as I've never had sleep problems, so I can't speak from personal experience. Cognitive and behavioural problems can lead to sleep problems on there own, in which case CBT can be helpful. Physical health problems can lead to sleep problems, which can also lead to cognitive and behavioural problems which make things worse, in which case CBT can be helpful. A lot depends upon how intelligent and honest the therapist is, and the framework which they are operating within.

With CFS, particularly in the UK, we've tended to see the worst of CBT, but that doesn't mean all CBT should be condemned because of that, just as the misuse of drugs should not mean that no drugs should ever be used. A lot depends upon the specifics. I also think that the problems we've seen with CBT and CFS do raise wider concerns about CBT as a therapy, and that these concerns have not been adequately addressed yet (eg: the power given to the therapist's assumptions about what cognitions should be seen as reasonable, and what dysfunctional, the lack of accountability, etc).

I don't think that there's any particular reason to be concerned about Nutt's belief that CBT can be helpful for sleep disturbance, but that could depend upon the specifics. I've not seen anything which shows that it will affect his CFS study.

(I hope this clears things up a bit, but worry it could make things worse!)

 

Redacted UK "secret" ME files

I have just read the redacted version of the UK "secret" ME files, which can be downloaded for free from the UK national archives. It is about 30 megabytes:
http://www.nationalarchives.gov.uk/documentsonline/default.asp

There is a specific link that can be found by following the older post I gave on this earlier in the thread, but it takes a bit of searching to find it and I have too much to do right now.

Most redactions (as single events) are indeed apparent to be names, addresses and so on. They are found in letterheads, signatures and other circumstances where you would expect a name, like in "[redacted] said..."

One section has eleven pages redacted. There is NO clue as to the content.

There are many instances of a page being redacted, frequently in the context of a letter that is being sent to the MRC. There are several instances of two pages redacted.

1993 saw a written complaint that antidepressents plus exercise were often recommended but found to be harmful.

A nice summary by Behan discusses epidemics, how many are associated with polio, including an epidemic in nurses who treated polio patients. Also 6-8% of some epidemics get PVFS and do not recover. However, sporadic cases may be ten times more common than epidemic cases. This is a long summary report by Behan, though very out of date now.

What I did NOT see on my first reading was a comment on vaccines inducing CFS at almost 100%. Was it ever there? Have they gone back and redacted it? Was the source used for this claim something else? I don't know.

Bye, Alex