Article: FINE

You can view the page at http://www.forums.aboutmecfs.org/content.php?123-FINE

 

I am a veteran vote spoiler.

I realised a long time ago no party had the interests of people like me and mine at heart, sadly, and power is the driving force.

The 'televised debate' was more like an episode of 'Call My Bluff', for example, using all the old rhetorical devices and ad hominem leading to three performances.

I use my voting slip to write a pithy assertion/demand - have done ME/CFS in the past- I have an unrelated subject to shout about this week though.

I believe they have to read out the spoiled votes to the candidates? I'm only going on third hand information there though.

The reasons I say this are only that 'party' politics can get very anodyne at best; many people, being too disillusioned to vote, then get accused of apathy. Some creative spoiled votes provide an alternative means of registering your disapproval if you are feeling disenfranchised.

 

Great article Cort....Thanks for keeping us informed.:Retro smile:

 

May already be in the works

I know what you are saying but i cant believe that our UK government doesn't know that there is a real disease process going on. Its far easier to turn a blind eye and let the blinkered Psychiatrists cover this up. Hopefully the latest PACE trial will flounder. But going on there efforts the last 20 yrs i believe we will be put through there CBT grinding stone before there done. I think only then when thousands of individuals are made severely worse will the real disease process be taken seriously. The more they push there psychiatric views eventually they will trip up when their statistic's fail to accomplish.

What can be done about it until then? With the information made available from the likes of Cort and crew(with much thanks)at least we are able to see what's going on and what's about to happen. Knowledge is power. we are able to individually defend ourselves against these so called Psychiatrists doing it for our own best interest! Reeves has been removed but still lurking in the background. Our own Wesley is the one hard to get rid of.Reeves is nothing compared to Wessley. Wessley seams to have ultimate power in keeping this under his wing. He seems to answer to no man and i suspect his roots are deep within Government Power. But who can prove it. Then across the pond there's XMRV. Even if is finally proved to cause ME symptoms ,I'm sure there will still be a fight on our hands in the UK for many years to come.

Hey Cort, I dint realize that Your CDC had its very own PACE trial going on. Were the UK psychiatrists involved at all.?

From the CDC Five-Year Plan
Clinical Intervention Studies

Clinical behavioral intervention studies will be conducted in collaboration with Emory University School of Medicine, Bibb County Medical Society, Mercer School of Medicine, Mayo Clinic, and UK National Health Service. Anticipated protocol development will begin in late 2010-2011, with studies continuing through 2013.

* Evaluate cognitive behavioral therapy and graded exercise in participants
* Stratify impact of intervention by various parameters including duration of illness, onset type, early life stress, psychiatric comorbidity, cortisol responsiveness, and fMRI changes

Dr. Reeves considered UK psychiatrist, and lead researcher with the PACE trial, Dr. Peter White his "favorite sparring partner." I guess the question is would the CDC will use the 1991 Oxford criteria or the CDC Empirical definition - although if a comparison were made there would be most likely be little difference in patient groups.

A check of PubMed, shows these two have previously teamed up for research and Dr. White often reviewed CDC research papers.

 

Not to mention Dr. White helped Reeves and the CAA create the CME which are the Continuing Medical Educational materials our doctors use to learn how to treat CFS.

 

Hi Marco

Sorry. I was having a bit of fun with regard the regional bias/family loyalties/long standing class bias towards Labour/Conservatives. But on reflection I agree it was both unwise and misguided.

I did not vote Labour BTW and if the Lib Dems have said anything remotely encouraging then I applaud them. I was disgusted by the recent performance in the House when Gill Heron, Health Minister? replied to a question asked by a west country backbench Lib Dem about what the government were doing (not doing) re biomedical research.

No need to apologise Adam.

I dare say, post the results on Friday, that whoever wins will have to come clean about the true scale of the national debt and the resulting austerity measures will mean a tough time all round.

Hopefully tough enough to ditch any proposed extension of unproven luxuries like CBT (no smiley for fingers crossed!)

 

Psychiatry

I agree that Reeves has hardly the impact that Wessely has. However poorly it turned out at least Reeves concentrated on physiology and most of the researchers here in the US are focused on physiology not psychology.

CDC has a CBT trial planned, I believe that incorporated with a brain imaging study (I believe). We should know more soon.

In my ten years with ME I have experienced and witnessed the insidious ascendancy, progression and tentacles of Psychiatric theory - somatization (where's the science - Royal Free - mass hysteria). In 2010 to be carried fainting 3 times to A & E and presented with a Psychiatrist (we've a new theory) where limited investigation had failed real Doctors who deeply knew a disease process. We'll get there - and to fellow Brits please support/watch Invest in ME - Annual Conference London 26/5 Whittemore, Peterson, Cheyney, Chia, Markovits, Klimas, Hooper. And others quietly working to overturn the whole of ME hisory.

 

I've said this elsewhere, but the irony is that the pragmatic rehabilitation had no long-term impact on anxiety or depression. Even if ME were caused by psychological factors, as the psychologizers say it is, their solution wouldn't help.

 

A point id like to make. I was led to believe CBT was originally designed by psychiatrists and authorized by government as only a complementary therapy to help cope and manage physical disability. But covertly, over at least 20 years or more, this complimentary therapy has been stealthily manipulated into common use,
and is now seen by some/many as the only treatment or even cure for CFS. I had CBT therapy over 20 years ago, But not like this present version. This version is harsh and unforgiving. JUST SAY NO..

 

I know of someone with pschitz dx, that recently told their psychiatrist that they were feeling really well and that they could definatly see themselves going back into work place.

I dont know what question or situation lead to this statment, but I know the person quite well and imagine it was an engineered discussion with that outcome desired.

2 hours later they got a phone call from one of the back to work bods.

The person concerned had only been feeling well for less than a month, less than five weeks ago they could'nt stay awake for than an hour or two.

in what world can we get that kind of medical help, the one where we make a statement and 2 hours later we get help.

in what world is it that a trained psychitrist would put that kind of pressure on someone that suffers relapses under pressure.

So now we have someone that was feeling well, positve upbeat and capable, feeling insecure, foolish and scarred.

Also what trust will there be now between the patient and the psychiatrist, and undoubtedly if the patient voiced a distrust of the psychiayrist the patient would merely be displyaing a symptom of mentle illness, as opposed to sound judgement.

 

The whole idea that patients will improve with exercise no matter whats wrong with them(not just ME/CFS) is gaining ground throughout the medical profession.

Patients in hospital ICU units are now being dragged out of bed and forced to exercise supposedly to get them out of the ICU 2 days earlier.

Bizarre experiment chases patients out of the ICU
Talk about kicking patients when they’re down! Johns Hopkins researchers conducted a bizarre series of “exercise” experiments on critically ill patients in the ICU. They found that 30-45 minutes of this abuse a day got the patients out of the unit between two and three days earlier.

Hopefully, these patients went someplace where they could actually get the rest they need — and not a funeral parlor.

These researchers wouldn’t even let life support machines get in the way of their twisted experiments. They actually connected these poor, sick patients to peddling machines and zapped them with electric paddles in the name of “exercise.”

Didn’t they used to do that in prisons until civil rights groups put a stop to it? It was only a matter of time before criminals started getting more respect than sick people. I just never thought I’d live to see the day.

Now let me tell you what really happened here — because when I read in the Archives of Physical Medicine and Rehabilitation that these patients were getting out of the ICU quicker, I knew there was more to this than dragging sick people down the halls and zapping them with electric paddles.

And of course there is.

To get the patients “ready” for their torture sessions, the researchers had them cut back on meds like sedatives. After all, you can’t force someone to exercise when they’re asleep or hallucinating.

AHA! There you have it — the real answer.

The simple fact of the matter is that ANYONE will get better faster if they take fewer meds. These drugs come packed with the worst side effects… and can turn already- sick patients into drooling infants.

Listen, there’s nothing wrong with simple basic movement — no one needs a study to show the importance of not sitting on your tail all day. But if you’re sick and need rest, get your rest — just don’t swallow any pills unless you need to, and you’ll be back in fighting shape in no time.

 

The whole idea that patients will improve with exercise no matter whats wrong with them(not just ME/CFS) is gaining ground throughout the medical profession.

Patients in hospital ICU units are now being dragged out of bed and forced to exercise supposedly to get them out of the ICU 2 days earlier.

http://douglassreport.com/2010/04/30/critically-abused

Good find, liverock! The article shows how far the medical profession's blind faith in exercise can go.

 

Very good BMJ rapid response to the FINE Trial Paper

[sb: I couldn't find this posted anywhere. Well done Sam.]

Rosie Cox <RosieCox@ntlworld.com> [via Co-Cure Moderators <co-cure-mod@listserv.nodak.edu>] to CO-CURE May 6

http://www.bmj.com/cgi/eletters/340/apr22_3/c1777

Competing interests: None declared

A valedictory dispatch from the Psychosocial School? 5 May 2010
Sam Carter,
ME Patient

Does Pragmatic Rehabilitation (PR) reduce the "fatigue" experienced by
people diagnosed with CFS/ME according to the Oxford criteria (1)? Wearden
et al report in the Abstract of their paper that after 20 weeks of PR
participants had "significantly improved fatigue" and, in their linked
editorial, Moss-Morris and Hamilton state that participants receiving PR
were "significantly less fatigued". However, in the body of the text,
Wearden et al describe the improvement as being "small" and "clinically
modest". Thus, in the same journal, we find that the effect of PR on fatigue
is simultaneously "significant" and "small".

The effect cannot be both large and small, so which interpretation best
matches the data?

A participant's fatigue was measured using the 11 item Chalder Fatigue Scale
(ChFS) "scored dichotomously on a four point scale (0, 0, 1, or 1)". The
ChFS has been criticised because it "has a low ceiling, so patients with
maximal scores at baseline will not be able to record an exacerbation after
treatment." (2) The maximum one can score on the ChFS is 11, after which it
cannot detect further deterioration. It can be seen from the published data
that participants receiving PR had a mean baseline ChFS score of 10.49 from
which it can be calculated that between 47 and 88 of the 95 participants
started therapy with a ChFS score of 11. Therefore, at least half of the
participants could not report that PR had worsened their fatigue, even if
such were the case. PR involves graded exercise so one would expect this
therapy more than "supportive listening" or normal GP treatment
(unspecified) to exacerbate fatigue but, had this occurred, the ChFS could
not have detected it. Thus, the inability of the ChFS to measure
deterioration in this patient cohort biases the trial in favour of finding
"improvements" in fatigue and, in particular, favours PR because
exercise-induced relapses cannot be recorded.

A genuine improvement in fatigue would, axiomatically, lead to increased
physical capacity, but no statistically significant change in physical
function was found in the PR group and, in fact, participants randomised to
the control group (GP treatment as usual) experienced greater improvement in
physical function.

Thus the conclusion that PR led to a real improvement in participants'
fatigue must be interpreted with caution.

The authors suggest that "treatment effects may have been enhanced had we
been able to provide post-treatment booster sessions." However, it is
instructive to note that the mean ChFS score fell from 10.49 at baseline to
8.39 after 20 weeks of therapy where, according to the text, "total scores
of four or more on the fatigue scale designate clinically significant levels
of fatigue." Therefore, even if extra sessions had trebled the efficacy of
Pragmatic Rehabilitation, participants would still have "clinically
significant levels of fatigue".

Notwithstanding, Wearden et al comment: "it is likely that our trial gives
an accurate indication of the effectiveness of nurse delivered pragmatic
rehabilitation and supportive listening for CFS/ME in primary care." Indeed
it does: the data provide strong evidence that the anxiety and
deconditioning model of CFS/ME on which the trial is predicated is either
wrong or, at best, incomplete. These results are immensely important because
they demonstrate that if a cure for CFS/ME is to be found, one must look
beyond the psycho-behavioural paradigm.

(1) Sharpe MC, Archard LC, Banatvala JE, et al. (February 1991). "A
report--chronic fatigue syndrome: guidelines for research". J R Soc Med 84
(2): 118-21

(2) http://www.biomedcentral.com/1471-2377/7/6/comments

 

A valedictory dispatch from the Psychosocial School? 5 May 2010
Sam Carter,
ME Patient

<snip>

A participant's fatigue was measured using the 11 item Chalder Fatigue Scale
(ChFS) "scored dichotomously on a four point scale (0, 0, 1, or 1)". The
ChFS has been criticised because it "has a low ceiling, so patients with
maximal scores at baseline will not be able to record an exacerbation after
treatment." (2) The maximum one can score on the ChFS is 11, after which it
cannot detect further deterioration. It can be seen from the published data
that participants receiving PR had a mean baseline ChFS score of 10.49 from
which it can be calculated that between 47 and 88 of the 95 participants
started therapy with a ChFS score of 11. Therefore, at least half of the
participants could not report that PR had worsened their fatigue, even if
such were the case. PR involves graded exercise so one would expect this
therapy more than "supportive listening" or normal GP treatment
(unspecified) to exacerbate fatigue but, had this occurred, the ChFS could
not have detected it. Thus, the inability of the ChFS to measure
deterioration in this patient cohort biases the trial in favour of finding
"improvements" in fatigue and, in particular, favours PR because
exercise-induced relapses cannot be recorded.

HAHAHAHAHAHA! There's no evidence of damage because they made it so you can't measure the evidence. [TomK's head will surely explode with expasperation.]

 

I couldn't resist bringing this over. Seems appropriate for what I know of the FINE trials.

"Fine. It's easier to say I am fine, but fine really means frustrated, irritated, nauseated and exhausted."

From 2 women from Maine who have just published a book on ME/CFS and FMS (see this thread for more info on them and the book)