Discussion in 'Latest ME/CFS Research' started by Firestormm, May 6, 2014.
Interesting... Perhaps Friedburg should have written a letter to the editor about a certain paper too...
Looks like they reference those that did write. Would be interesting to see the full paper.
There's a full list of references on the abstract page. (It's a drop-down list.)
There's a number of references that we are familiar with.
that would be better for sure but then my experience of near recovery is from getting worse first. also "improvements" without full recovery are just waiting to fall back as me/cfs folk retox so easily so these cannot really be dfined as a win and to do so misleads.. this definition is for trials really. resultys is more important than the problem...how do you factor getting worse first through die off etc? common to lose a little weight recovering from digestive issues too. for me it seems that i have it all or nothing, there is no inbetween really...though having stuff like heart sack infections etc certainly complicates it.
they should forget recovery and concentrate on illness. illness is the reality. so much pressure to improve, recover etc. studies and trials competing for best results with little understanding of the illness or patients. first, let everyone be ill.
your viewpoint is eloquently stated with simplicity.
all the scientific delving into "reasons" and definitions, and the myriad of possibilities, is so complicated.
First, find the underlying cause(s) and by so doing, the disabling gestures at flailing for "reasons" are eliminated.
The science required to achieve this goal is far beyond most patient's ability, so why attempt it?
as we age, and edge ever-closer to death from this disease, our time is better spent in other endeavors: such as
Creating Love , Being Kind , Supporting the True Scientists' Work , and Reaching for our True Future.
Also, it would be great to know .How. this horrible illness was started, and .Why. it is largely ignored.
Beyond that, I hope for the dedicated science to be successful. However, my personal hope is nearly depleted after
Thirty Two Years.
The presumption that we just have to wait for our scientists to be successful is flawed. That is necessary but not sufficient. In H. pylori as a cause of gastric ulcers, it was patients who brought a proven treatment to the public, who demanded that doctors treat them. When there is resistance in the medical community, a lack of will or funding, then it is advocates who make a difference. Those advocates can be everyday patients, it requires nothing special. I suspect other disease have a similar history.
Why things are ignored is something I am investigating, and will be for some years. Simple answers fail, including conspiracy theories. Things are very wrong, but its quite widespread.
Its fine to pursue whatever we can of life in the meantime. I wouldn't want anyone to stop doing that. It is however necessary for some of us to watch and push the science, and watch and slow the antiscience. Antiscience is alive and well, something I might blog about though if you have read my blogs on Zombie Science you will have part of the picture.
It would be good to have solid, data-based recovery criteria. The PACE recovery criteria are ludicrous. It still baffles me as to why so many are taken in, I have to presume its through ignorance or bias at this point. If we applied the recovery criteria to almost any other disease, using either SF-36 or the 6 minute walking test, then most people disabled by disease would be considered recovered. If recovery criteria do not make sense in the context of other diseases using objective measures (not that either SF-36 or the 6mwt is particularly reliable, and SF-36 is subjective), why do they make sense in CFS or ME?
We do need to read this paper. Abstracts are not good enough.
Seems like a reasonable paper which does highlight some important aspects, but it's too gentle on the claims related to the BPS treatment, and doesn't stress the importance of objective criteria enough (via actometer or similar).
I notice a small error with the table for the PACE Trial recovery paper:
It should be
less than or equal to 18
greater than or equal to 60.
hi Alex,of course you are right. we need advocates. what i said(or meant to convey) was that there are so many patients who don't have the skills/knowledge but who spend so much time trying to figure it all out, that it is counter-productive to their "recovery"... to our own abilities to make the effort. Personally I spent 20 years in front of a computer, hours each day, doing CFS & ME research and in retrospect it probably wasn't good for me physically. Yes, i became much more knowledgeable and no doubt that was beneficial. But looking at the turmoil that has enveloped our efforts to get more aid from those in Govt who are entrusted to stop such devastation in its' population, it has taken a toll and perhaps (personally speaking) I might now be better off to leave it to the "experts" among us. You certainly are in that category of persons with the advanced knowledge, but I know I'm not. Frankly , I am so physically depleted now that without a doubt my days of strong advocacy are done. I will now entrust the role to those who are less ill, and probably younger. And to those more youthful, I wish they will fight as hard as I have. Yes, it feels a lot like a defeat to me. When something as horrible as this illness is not by now front page news world-wide, I really don't know what more it will take to advocate for us.
I think perhaps it would be better to have been in the HIV/AIDS population where so many died so fast that it definitely attracted attention. Even then people had to take it to the streets, which I don't think our patient-population has the ability to accomplish. I remain dumbfounded that the AIDS advocacy groups haven't risen to our defense like we did for them. I suppose I will go to my grave perplexed by that.
Thank you Alex, for all that you do.
I do understand your position, @5150 . I have lived it. I started in advocacy in 1993, mostly backing novel medical treatment and research, got into it more in 1998-9, then burnt out after moving house when my biochem degree was done. For years I did little, I needed that time to recover, and to develop better pacing strategies. In about 2009 I returned to advocacy.
These days I am in decline again. I write little, I research much less than I did, and my book is on hold. I am patient with it though ... my body needs the time it needs, however long that is. Pushing health to advance advocacy is a big no for this disease as we can so easily get sicker. That is one of the huge things that has held us back ... we are far sicker than most disease groups, we can do far less particularly in a sustained fashion.
There is much that is perplexing about this situation. It does not make rational sense, but then we don't know all the details. Reason is bounded by knowledge.
The real time for the average patient as advocate will be when we have something very solid to advocate about. A test, a treatment, a cure, an injustice .are the kinds of things I mean. That time is approaching, but alas I cannot predict the future, and all I can say is its in the medium term future now, not the long term.
In the meantime for anyone in decline, too sick, too disillusioned, too burnt out, just hang on. Things change, its the one thing we can be sure of. What we don't know is when. The world will not remain ignorant about ME forever.
I wasn't terribly impressed with this paper.
This is reference 52:
There's no way that paper justifies the points being made there.
If they are going to expect patients with CFS to put up with some rubbish version of 'recovery' because we were previously so very over-active, they'd better have some good evidence that this was actually the case. Anyway - it would still be fair to expect 'recovered' CFS patients to be able to do as much as healthy controls.
I'm not on a 'quest' for treatment, and have no interest in medical staff playing any role in finding a 'personal balance' in my life. Also - it's a bit rich to talk about patients having 'unrealistic expectations' when those expectations will have been shaped by the 'rousing reassurance' or medical staff, or 'encouraging' claims about recovery that come from misleading and manipulated criteria.
I'm surprised by the tone of a lot of this considering it came from Friedberg. It seems to me to present patients as 'others' in a rather dismissive way.
I think it might be more accurate for researchers to use the word "remission" instead of "recovery" in ME/CFS studies. They wouldn't say that a patient with MS or Lupus had "recovered" from their illness if they experienced some symptom relief due to a particular treatment, right?
its not a divergence from the meaning of recovery to mean a full return to health. anything less is a divergence from that meaning. operational definition of recovery is probably born out of bio-medical research's need for results to warrant investmrent or to cajole folk into buying their wares. i saw one study that showed that one person recovered on anti-biotics...1 out of 20. this then became the 5% recover using this method. which even sufferers were happy to bandy about as reason to proceed. i'll take this because of that, not because i understand but because it gives such and such a result. one person in one study who no doubt gave an "operational" appearance of recovery. this need for results/improvements is part of the cause of the situattion and will continue it. so busy looking for an answer that the problem itself is overlooked.its about stats and money not illness and people.
ive never gone for the 80% improvement etc. for me "mild" me/cfs, from "improvements" or rekating to some criteria, is a misnomer really. yes its nicer to have less symptons through control of lifestyle and diet but anything less than full recovery is still hell. for me i operate between 10-20% of my former activity tolerance (not that that even gives an accurate picture), and after i go past 20 30% i jump to 90% plus. there is no 30% - 90% gradual improvement.
an nhs working report in 1995 defined "mild" me/cfs as still being a life shattering illness. if, by "recovery", thats all they wish for me then they can keep it.
illness is my interest, not recovery. recovery happens as a result of understanding illness. the need for results and their idea of recovery imply they don't understand it and nothing less than that cuts it.
‘‘the quest for treatment is not only
a quest for relief of symptoms; it is also seen as a journey
to find personal balance in one’s life. Patients approach the
recovery process by making decisions as to what works for
the individual, rather than pursuing each recommended
What kind of New Age nonsense? I won't speak for any of you, but I am most certainly not on a "journey"; I'm looking for a cure. I don't need to find "personal balance" in my life; I need to get cured. And, hell yeah, I pursue any recommended biomedical treatment that looks like it has any sense to it--because I want to be cured.
The introduction points out that "recovery from an illness is a fundamental concept in health care, but its operational meaning remains vague". It describes the difference between the definitions of 'recovery' and 'improvement' but also mentions that these terms are commonly conflated in the literature, and that there is no consensus for how recovery from CFS is defined, which may be in part due to the "absence of biomarkers or diagnostic tests". It is also pointed out that these problems are not unique to CFS and are common in some other chronic physical and mental conditions.
22 studies made the inclusion criteria and are presented in Table 1. The 'operational' definitions of recovery are very varied. The paper refers to the strictest definition of recovery in the Knoop et al. (2007) paper as "the most stringent standard found, although it was rarely used". This contradicts White et al's claim that the definition of recovery used in the PACE trial was more conservative than that of Knoop et al (which was already clearly wrong when examining both papers).
The above was somewhat annoying because it can give the misleading impression that the thresholds used in both studies were similar and therefore the PACE trial 'recovery' rates were comparable.
This part was good: "the current absence of definitive tests for CFS may indicate the need for recovery criteria that set high but reasonable standards for behavioral recovery that approach restoration of pre-morbid health". The physical function threshold used in the PACE trial for 'recovery' was insulting. I wish this paper went into how it overlapped with entry criteria, and that most of the so-called 'recovery' criteria were apparently changed after the outcome data were in.
As the authors of this paper indicate, there are important elements of recovery to capture, such as pre-morbid activity levels, reduction in major symptoms (too much focus on fatigue overestimates recovery rates), return to normal healthy function, employment, and perceptions about health i.e. feeling recovered.
This part was generally good:
However, the above goodness is balanced out with the next section titled "Recovery and pre-morbid functioning" which contains questionable speculation about action-proneness and 'illness-producing activity levels'. Yes, there are 'healthy limits', and perhaps over-exertion when healthy is a problem that applies to the occasional patient, but it annoys me how some researchers have used this concept to justify questionably low thresholds for normal function (or to explain away the failures of their own treatment models) as if that should be acceptable to most patients who have completely recovered.
This next issue is important to, but as others already commented on, part of it waters down the meaning of genuine complete recovery with a questionable application of pragmatism.
As Esther said, which deserves repeating:
"If they are going to expect patients with CFS to put up with some rubbish version of 'recovery' because we were previously so very over-active, they'd better have some good evidence that this was actually the case. Anyway - it would still be fair to expect 'recovered' CFS patients to be able to do as much as healthy controls. [...] "I'm not on a 'quest' for treatment, and have no interest in medical staff playing any role in finding a 'personal balance' in my life. Also - it's a bit rich to talk about patients having 'unrealistic expectations' when those expectations will have been shaped by the 'rousing reassurance' or medical staff, or 'encouraging' claims about recovery that come from misleading and manipulated criteria."
Overall the paper is OK and highlights important issues. It contains soft criticism of how the term 'recovery' has been inappropriately bandied around and conflated with 'improvement', but as A.B. stated, does not go far enough. I also wish they discussed the implications of false hope and harmful expectations from patients that comes from inadequate definitions of recovery being misleadingly presented as what healthy people would regard as healthy.
I understand there are practical difficulties in defining it, but recovery from CFS should not be seen as some ambiguous mystery and should not be watered down by concepts which sound like apologizing for the remaining symptoms of CFS. There needs to be a more consistent and universally accepted definition of recovery. Patients should be consulted more on how recovery should be defined. The current mess is disheartening.
Haven't read the full paper, but this stands out so far. Very important point.
they're clutching at straws. comical really how words can be used that give a feeling of intelligence and understanding and yet the bottom line is...they don't have a clue. its like all that learning has got to mean they know something. just throwing out logical sounding sentences, without any clue as to how it will be "controlled", means nothing at all. they just can't get away from concentrating on the answer, or appearence of, instead of the problem.
Defining 'recovery' is similar to defining a 'successful treatment' isn't it? It lies in the hands of the beholder.
I was just reading a blog, and there were several comments from people saying they felt their - largely antiviral treatments - had been 'successful', and yet they are still here...
Recovery is a relative term for me, like 'treatment', and 'therapy' come to think of it. I feel more recovered today than I did, say, 4 years ago but I am not cured, and I remain disabled.
Another word/term is 'remission'... presumably I could now be in remission to some extent but would only really know if I 'relapsed' another relative word...
Relative to the patient - and to the doctor I guess - and your family and friends... all pretty subjective but it needs some measurement applied at some point and not everyone will agree what that should be of course.
I think time has something to do with it. How long have I maintained this level of 'function' of 'coping' of 'management' of 'independence' etc. ... but again, how do you cater for the 'fluctuations'...
It's a hard one to answer completely well and these terms get bandied around by people in everyday life...
i know this won't be popular but i think the anti-viral/anti-biotic protocols do me/cfs a disservice because of this. should be said though that they've indicated that chronic infection is clearly present but i knew that anyway. this my beef with the bio-medical understanding of illness. the appearence of less sytmptoms is king. the results are what they concentrate on and thats at the expense of recovery. with anti-virals they all fall back because making oneself toxic might mean no little invaders, dna oir microbes, but how ya gonna repair the digestive tract in that environment??? take stuff to mop up the toxicity? but the anit-viral/biotic tablet itself is toxic so you mop that up it won't "work"..note quotes. thankfully conventional medicine agreees and so i won't be compelled to do what is, according to many, helping them.
thats one fear with results/stats and the endless manipulation of words...that they'll be used to compel treatment or lose "help". there's surely money to be had in good stats...plus the justification of jobs that were trained for for many years and at great cost. im a gene expert i must find the gene connection blabla.
The mind that is thinking in terms of a part can never perceive the whole.
my self manipulated quote of the day "in the land of the blind the appearence of less symptons is king"
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