It's all about ME
| 29 June, 2011 | Richard P. Grant |
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The XMRV/chronic fatigue syndrome controversy is still fresh in our minds. You might remember that I decried the effect the issue might have on patients. Another side to the tale is told by freelance journalist Nigel Hawkes, in a Feature article in last week’s BMJ, Dangers of research into chronic fatigue syndrome$. Hawkes highlights the case of CFS sufferers “conducting a relentless personalised attack on doctors and academics who are trying to discover its cause and improve its treatment.”
Patient advocate groups have been even more upset following the publication in the Lancet of a randomized controlled trial of different treatment options (the PACE trial), which showed that cognitive behaviour therapy (CBT) and graded exercise therapy (GET) were (moderately) effective in managing CFS, whereas adaptive pacing therapy (APT) wasn’t (all in addition to standard specialist medical care). The implication from this appears, to me, to be that treating CMS as a psychiatric illness is more effective than treating it as, say, a viral one. This does not make people happy (see the responses to the XMRV controversy, for example). While the criticism that (according to Charles Shepherd, medical adviser to and trustee of the ME Association) “funding has been almost totally focused on the psychiatric side” might well be valid, and might reasonably provoke anger and frustration in patients, the inability to point to a causative agent such as a virus might well be down to there not being one.
None of this excuses the behaviour of what Shepherd calls “a very very tiny minority—50 to 100 people, maybe.” It is fair to draw parallels between their actions and those of militant anti-vivisectionists. Scientists and clinicians trying to make people with CFS better have been subject to threats and personal abuse. In what world is that right?
As for Professor [Simon] Wessely, he gave up active research on CFS/ME 10 years ago. He now specialises in the problems of war veterans. “”I now go to Iraq and Afghanistan, where I feel a lot safer,” he says.
–Nigel Hawkes in the BMJ
BMJ editor Fiona Godlee, in an accompanying editorial, describes how her deputy editor Trish Groves was heckled at the sixth Invest in ME conference in London, and calls for an end to the ‘stalemate’–also asking the ‘quiet majority’ of sufferers to make their ‘reasonable’ voices heard.
Unfortunately, the nature of the comments on Godlee’s and Hawkes’ articles don’t hold out much hope for that.
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Dear Richard P. Grant,
I hope to shed some light on the “bad” behaviour of CFS sufferers. ^^
CBT doesn’t help a CFS patient. If you look closely at the Pace trial, you will see that there were no real CFS sufferers, but only people who suffered from depression.
You write:
“The implication from this appears, to me, to be that treating CMS as a psychiatric illness is more effective than treating it as, say, a viral one.”
Yes of course it does appear to you, because you don’t have the background that a 12 years plus sufferer has. You read this article and of course you think: “it helps people with CFS.”
But almost every CFS sufferer has experience with psychological treatment. Many are open minded in the beginning. (Although haters like to go on and on about how CFS patients just don’t want to accept the psychological side, because it is “stigmatized”.)
If you believe it or not, many CFS sufferers start open minded to psychological treatment.
But after 12 years of living with the sickness, experiencing that the state of the psyche has absolutely NO influence on the development of your illness, experiencing that anti-depressants have NO influence on your energy level and that cognitive behavioural therapy does NOTHING but to overburden you, you finally realize that you have a physical disease and no psychological therapy will cure you.
Let me explain why CFS sufferers tend to react aggressively to Simon Wessely and EVERY psychological article or comment.
There is the absolute tendency of healthy people to WANT that CFS/ME is a psychological disease. I don’t know why this is, but every CFS sufferer has come to realize that people WANT us to have psychological problems.
They DON’T WANT to really consider that we have a physical illness. THIS HURTS!
This tendency is really upsetting us sufferers.
Most of us are too sick to do anything but search the internet for new studies, new articles and a glimmer of hope. We know this illness inside out. Many sufferers knew about the Pace trials BEFORE they were published in the Lancet. And they knew BEFORE that the patients in this study were not real CFS sufferers, but relatively healthy people with depression.
They knew BEFORE how the reactions of people, who have no idea how devastating the illness is, would be. “HAHA, you stupid CFS sufferers, now we have proven that it is all in your head! Because if it wasn’t in your head, psychological treatment wouldn’t help. Now accept it and let’s all forget this stupid virus thingy.”
The reactions of you people, who WANT the reason behind the illness to be psychological, we see them from 50 miles away, and this simply hurts our feelings. We can accept that a healthy person doesn’t want to dive deeper into the details of the sickness or look critically at something like the PACE trials. Yes that is okay, but it HURTS us to see how everybody WANTS the illness to be psychological.
It’s just ridiculous because CFS sufferers are treated like children. We know so much about the illness. From all kinds of sources. We read 1000 articles and google everyday for XMRV and CFS/ME. We really know stuff.
And then someone, who is not affected by the illness and rarely has contact with it, reads ONE article and forms his or her opinion from it. That would be okay, but THEN he or she writes something about it, telling CFS sufferers how they should be happy with this article or showing them “Here is the PACE trials, now you know!”
Can you see how this hurts our feelings and how humiliating this is?
My personal experience with cognitive behavioural therapy:
I was in stationary treatment for almost half a year.
It started well. In the beginning, the program was not too tight and I could handle sports therapy, work therapy and so on. I admit that it even helped me to feel better.
Exactly for two weeks. Then the program became harder, more sports, more work and different duties for the group, like cooking and shopping food.
It was too much for me, I felt like my body became worse every week. I told the behavioural therapists but they didn’t really care. They said I would adapt to all this.
Well I didn’t.
The only way I could survive this, was sleeping 8 hours at night and 4 to 6 hours during the day (between therapies and duties). I felt miserably, but I managed to get along thanks to all the sleep. I attended every therapy, did all duties and I really put effort into everything the therapists wanted me to do. I was a very compliant patient.
Let me repeat it, because it is important, I REALLY WAS A COMPLIANT PATIENT.
This went well until the therapists found out that I was sleeping during the day. Like I said before, no one wants to consider physical reasons behind the fact, that a CFS sufferer needs immense amounts of sleep, so they IMMEDIATELY said “you sleeping during the daytime, that’s a RETREAT STRATEGY, because you’re afraid to do this and that.”
So they FORCED me to stay out of bed during daytime for two weeks.
I was DEVASTATED after that. My body felt like I was 100years old. My body hurt. My head hurt. I wanted to die. I became depressive. (yeah, real depressive in the medical meaning of the word).
Then I started to sleep during the day again because I knew it was the only way to save myself and EVEN MY THERAPIST saw that I needed to do so because she SAW how devastated I was and that I NEEDED the excessive amounts of sleep.
Unfortunately another therapist didn’t know this (because of his vacations) and two weeks later he FORCED me to stand up. He pulled the sheets off my bed. He was really screaming: “STAND UP AT ONCE, THERE IS NO REASON TO LIE IN BED DURING DAYTIME!”
Well, for me there was enough reason, because I felt how I was dying without sleep during the day.
I wanted him to know how badly I needed my sleep and said something like: “I’m gonna fight with the sword for my holy sleep.” It was exaggerated, I only wanted to stress how badly I needed to sleep. But he interpreted this as a murder menace (dont really know the english phrase) and I was put into the secure ward of the hospital.
I was there for a month, I wasn’t allowed to leave, I became friends with another patient, he tried to hang himself with my guitar strap, there where manic patients who would severely harass me and everyone told me how bad they felt for me being in the secure ward.
What can I say? It was GREAT to be there, because FINALLY I could sleep as much as I needed.
When I got out of the hospital I was in FAR WORSE shape than before I came into the hospital. It took me more than six months to regain only a BIT of my energy I lost during the therapy.
My immune system was so down because of all the stress, that I had an infection for over three months.
I needed to WEAR A CAP AT HOME, because my ears hurt even at room temperature.
I had problems to fall asleep, because of the two weeks they forced me to stay awake during the day. There I somehow managed to stay awake during the day but at night I somehow couldn’t find sleep because I had convulsively forced myself to stay awake and somehow couldn’t switch to “now it’s night, now you can sleep”. And ever since then, I have problems with sleeping.
Another nice side-effect: I had to separate from my 3years girlfriend, because after hospital, I was too ill to have a relationship. Going out was too strenous for me. Even a phone call was too much. So THANKS TO cognitive behavioural therapy, I have LOST THE GIRL I WANTED TO MARRY and two very close friends, too.
After six months I have recovered a bit. How did I do this? By doing exactly the opposite of the things I had to do in cognitive behavioural stationary treatment.
I left the house only once a week (buying cigarettes or other little things), I COMPLETELY abandoned my social life, I showered only once a week (people just don’t see how much CFS drains your energy. they won’t believe you that showering is exhausting for us), I did not do any sports, not even go for a walk (and two years before I was working out three times a week at the gym), I slept as much as I could.
Basically, I did everything to save energy.
And it helped. Now I am able to meet with friends once a week, shower every three days…
I am still far from the energy level, that I was in before they destroyed my body at the clinic with cognitive behavioural treatment.
Now can you understand how I feel when somebody reads an article and tells me, that a study has shown that CBT helps us sufferers?
Well, for me it’s just a stupid study, because I have EXPERIENCED myself how my CFS ridden body dies under CBT.
Oh and if anybody wants to say that my case is an individual case and not representative…well:
I GUARANTEE YOU THAT MY CASE IS MORE REPRESENTATIVE FOR CFS SUFFERERS THAN SOME LAME PACE TRIALS STUDY.
So perhaps you can understand why we CFS sufferers react allergically to everything psychological? Because we KNOW that the psyche has no effect on our illness and many of us have EXPERIENCED that CBT damages our body.
But people just WANT us to “understand” that our problems are just psychological.
A day later:
Thank you so much for not censoring my comments despite the somewhat aggressive tone! I really appreciate it! On several sites, they completely censored my comments of this kind.
I know that I exaggerated when I said “and then someone reads ONE study”.
I don’t want to be unfair to the author, I just hope to get the feeling of frustrastion we CFS people feel across. To explain the often times harsh reactions to psychological articles.
It’s just so sad, because I think there could be open and friendly discussions. The sickness is just so brutal, it is really hard to stay calm.
Again, thanks for not censoring my comments.
Kind regards
Hi Stephan
no problems–I can only imagine the frustration you must feel. However, I do think it’s wrong to say “The reactions of you people, who WANT the reason behind the illness to be psychological”.
I don’t think people *want* that, at all. They want to help CFS sufferers get well, and if it appears to them to be such an illness, then that’s the line they’ll take. I imagine that such a person, faced with new, incontrovertible evidence for a causative agent–a virus, say–would be very happy indeed.
While I also understand your ‘allergic reaction,’ I also know that attacking people who are trying to help is counterproductive.
One last thing. Randomized controlled trials treat patients in the aggregate. They are trying to find the best *overall* treatment, not look at each individual in the trial. So a treatment might work for ten patients, but make one worse–and that’s a positive result for the trial. It’s pretty darned depressing for the one person, and yes, it seems totally unfair to that one person. I guess the thing to do is to make sure that one person (and others like her) is not then left behind. Problem is that personalized medicine is tricky and expensive.
Hi Stephen.
“The implication from this appears, to me, to be that treating CFS as a psychiatric illness is more effective than treating it as, say, a viral one.”
That’s not exactly a ringing endorsement of the psychological approach to CFS, and I’m not even sure if it’s true. Treating all CFS patients as if they are psychologically ill creates significant social burdens for them that will not be picked up in an RCT like the Pace trial. It would seem a little silly to just start treating all with CFS as if they all had a viral illness though. I don’t know which approach would be least damaging, but neither seem sensible.
There are a number of studies which seem to show that CBT is more effective at improving scores in fatigue questionnaires for MS than those results shown by Pace for CFS (eg: http://www.psychosomaticmedicine.org/content/70/2/205.abstract) – although these studies tend to be more upfront about the danger of a psychological treatment altering the way in which patients answer questions without improving real disability levels.
I think that there are legitimate concerns about the way in which the results for Pace were spun, and the fact that many researchers seem to want to act as if this is just patients rejecting science is unreasonable.
The BMJ had claimed that Pace showed that CBT and GET cured just under at third of patients (http://www.meassociation.org.uk/?p=5757) – yet the criteria for this group of ‘cured’ or ‘back to normal’ patients was so loose that it included those who were more seriously ill than was needed to be classed as suffering from ‘severe and disabling fatigue’ at the start of the trial. This sort of misrepresentation of the efficacy of treatments available for CFS is key to understanding why so many patients distrust certain researchers. Being told that you are ‘cured’ when you have the physical functioning of the average 85 year old (an SF-36 PF score of 60 was used) is going to engender a certain amount of resentment.
That the BMJ failed to acknowledge it’s own role in causing the anger and problems that surround CFS, is utterly unsurprising, and reflects just how easy it is to dismiss a group of people who are thought may have psychological problems.
edit – I meant ‘Hi Richard’ above – as my comment was intended for Richard P Grant. Sorry.
thanks for your comments, gargal. I’m not convinced that anyone is dismissing “a group of people who are thought may have psychological problems.” Psychological illness is real illness, and needs handling as such. I think much of the heat surrounding the topic (and yes, it’s easy for me, on the sidelines, to say this) is stemming from the fact that we just don’t know the root cause of CFS. It might be viral; it might be psychological. Neither of these means it isn’t real, and that people aren’t trying to find an effective treatment.
Not really ‘All about ME’. In a written reply to a complaint to The Lancet, the PACE authors confirmed: ‘The PACE trial paper refers to chronic fatigue syndrome (CFS) which is operationally defined; it does not purport to be studying CFS/ME.’
http://www.meactionuk.org.uk/Hoopers-initial-response-to-PDW-letter.htm
The clinically less-than-convincing results have nevertheless been promoted as a cure for ME.
Indeed. But would you deny me the pun?
Hi Richard. I worry that I may not have been clear. I certainly agree that much of the trouble would be likely to dissipate if we were to have a greater understanding as to the cause(s) of CFS, but I think we can also point towards problems with which the way this uncertainty has been managed.
re: “Psychological illness is real illness, and needs handling as such”
I quite agree with this too, and hope I didn’t say anything which could be interpreted otherwise. But that ‘handling’ should not undermine a patient’s right to clear and accurate information about the efficacy of the treatments available to them, regardless of whether their condition is thought to be primarily physical, psychiatric, or somewhere in between. While some researchers believe it is more cognitively healthy for patients to believe that recovery is under their own control, this does not justify the sort of spinning of results that occurred with Pace. In the long-run, such patronising paternalism will only end up undermining the ability of patients to trust their doctors.
When the concerns of a group patients about the way they are being treated are by certain psychologist are then pathologised, I think that does indicate that they are being dismissed.
In the specific instance of Pace, whether the BMJ has behaved appropriately depends upon whether you believe that raising a patient’s SF 36 PF questionnaire score of 60 can be honestly classed as a ‘cure’. I’d really encourage anyone interested to look at the Bowling paper cited for the claim that that such a score should count as having got patients (all working age, average: 38) ‘back to normal’: http://jpubhealth.oxfordjournals.org/content/21/3/255.full.pdf+html
(In the Pace protocol, published half way through the trial, a score of 85 was required to indicate recovery: http://www.biomedcentral.com/1471-2377/7/6)
Is it reasonable for patients to see this as a misrepresentation? To me, it seems like part of the on-going problem those with a diagnosis of CFS have had with being misled by those they should be able to trust. Until this is resolved, and it’s acknowledged that patients deserve clear and accurate information, it will be very difficult for any culture of trust to emerge again.
This is a complicated topic, which requires a lot of reading to really comment upon. If one approaches it with the presumption that the claims made by researchers, or those publicising their work like the BMJ, can be taken at face value and without checking their figures, then it’s likely that you will be misled. This is why many patients are unable to trust their doctors and angry about the work of certain researchers.
Thanks for your reply also.
Thanks again, gargal. I totally agree that published work should be challenged, and I’m all for openness and transparency. And yes, one needs to do a metric shedload of reading to get up to speed on this.
We do, don’t we, have a big problem with paternalism and trust? I am reminded of the MMR/autism stink, when an erstwhile Prime Minister essentially said “shut up and get the jab.” He may have been right, but handled the matter execrably.
Just to clarify this point: “and it’s acknowledged that patients deserve clear and accurate information” – obviously this will be limited by the quality of the available evidence. I did not mean to imply that researchers had a responsibility to be omnipotent!
re paternalism – with the BMJ on Pace, they handled it badly, and they weren’t right! Having those with power over you take a paternalistic approach is particularly irritating when they’re not very good at it. Thanks.
Just one more point – with an awareness of the way in which CFS patients criticising the work of researchers are often seen – I really would encourage anyone to check out whether my claims are accurate of not. Even if you only look at the papers posted above, it should be clear how the SF-36 PF results from Pace were spun. If anyone disagrees with anything I’ve said, it would be great to hear why. Thanks.
Dear Richard P. Grant,
What do you think about the credibility of the scientists in the following scenario:
A team planned on conducting a clinical trial and developed a comprehensive protocol, with well chosen thresholds for clinically significant “positive outcomes” and recovery, as well as adverse outcomes. A variety of secondary outcomes were also planned, including the most objective measure; the amount of hours in employment study.
When the results of the study were finally published, none of the figures for “positive outcomes”, nor “recovery” were reported as per the protocol, nor any replacement that was remotely similar to those original thresholds.
The scoring or thresholds for both the primary and much of secondary measures were changed. Including what was considered an adverse outcome, since between 4-9% of patients reported ‘serious adverse events’.
The most important secondary measure, the one that would show any objective changes in activity levels was not reported.
Why would a credible team of scientists make such a drastic retreat from their original protocol? Unless it was an attempt to cover up the fact that their results weren’t nearly as good as they expected.
No one is denying that psychological treatments could lead to quality of life improvements in such patients, even though it does not result in a reduction of disability in most patients with CFS (see below). The stigma against patients with psychological illnesses is not merely a matter of public perception. Those with such illnesses also have significant limitations in terms of disability insurance claims (2 year limit on policies), or applying for welfare.
The main problem of these clinical trials is they are subject to various biases. A short term increase in self efficacy will result in improvements on questionnaires, but with little reduction in disability as measured with actometers for example.
Now a double blind RCT controls will control for many of these biases, but that is not possible for these treatments. That makes objective measurements such as actometer results and hours spent in employment/study more important.
To quote from my recent comment on the BMJ article by Hawkes,
http://www.bmj.com/content/342/bmj.d3780.extract/reply#bmj_el_262777
“Unfortunately, when activity levels in CBT trials are measured, no improvement is found [5]. Likewise, in an audit of the Belgian Interdisciplinary rehabilitation programme for patients with CFS (n=593), there was no improvement in activity levels at the conclusion of treatment [6]. The therapy component systematically included CBT and GET, with sessions spread over 6 to 12 months [6]. Employment status decreased at the end of the therapy and the 6 month follow-up, however there was an increase in study and volunteer work, so the overall level of physical capacity as reported by the study did not change [6]. ”
And the associated references:
[5] Wiborg et al. 2010 “How does cognitive behaviour therapy reduce fatigue in patients with chronic fatigue syndrome? The role of physical activity.” http://www.ncbi.nlm.nih.gov/pubmed/20047707
[6] KCE Reports 88A Chronisch Vermoeidheidssyndroom: diagnose, behandeling en zorgorganisatie, 2008. (Parts are in English) http://www.kce.fgov.be/Download.aspx?ID=1222
I would have liked to cite more studies, but there has only been one meta-review of actometer results. The Belgian report is the largest published study and shows the results in practise, rather than a clinical trial.
I think that patients are not so interested in the fact that they can be conditioned into reporting lower scores on questionnaires. They are more interested in long term improvements in levels of disability and that’s why non blinded clinical trials need to report objective measures to convince both patients and medical practitioners from other fields.
I think it is becoming increasingly unlikely that there is a link between CFS and XMRV. I do however find it unfortunate that the media seems to have forgotten that the same debate existed between XMRV and prostate cancer, prior to the CFS studies. The findings of which are just as likely to be down to contamination of samples.
CFS has heterogenous triggers, so looking for a single virus in all patients is misguided. Given the pattern of biological abnormalities found so far in CFS, it is not so much the initial trigger, but the corresponding response and continued biological dysregulation that is worthy of investigation. It is unfortunate that when comparing the societal economic costs and levels of disability in CFS, to levels of research funding in the USA, you find that it is underfunded by a factor of 20-50 times (Comparing NIH funding levels). I found this to be quite a shock when I first started making comparisons. But it does tend to explain the current state of CFS research.
It is well known that CB/GET is harmful to those with the neurological disease ME. To therefore state that people are only trying to help, may seem a lovely thing to attempt, except when it is in the face of overwhelming evidence that those “treatments” do not help.
The recent PACE trial, as the authors have admitted, was not studying ME patients, or CFS/ME, or ME/CFS, but those with Oxford criteria CFS. A definition that does not describe a disease at all and excludes those with ME. Now the results in the PACE were not even moderately helpful. An 8% subjective improvement and a score low enough to enter the trial could never be viewed in such a way.
You mention that, “the XMRV/chronic fatigue syndrome controversy is still fresh in our minds.” Why would it be off anyone minds when research is continuing around the world at a pace. 10 new positive studies are due at the end of the year. Perhaps you will try and say they found the origin of XMRV. Perhaps you should read this then: http://www.imeassoc.com/Response__Paprotka_et_al.html
I would be interested to know when you would acknowledge that a doctor/scientist has attacked a patient? Not physically, although there are many cases, but for now verbally. What would cross the line for you? Would it be denial of a disease? Refusal to treat a disease? Shouting? Laughing?
Could you also highlight who this small minority of patients is? No one ever does say who. Are the scientist, like HTLV discoverer Frank Ruscetti, also included in this group? What about Hep C discoverer Harvey Alter? Does it include careers? Doctors who want to treat, but know the biology and understand CBT/GET have no effect? Can you prove that the group is small? That the group is attacking or being personal? Can you report a doctor without being personal for abusing you and others? How would you go about that in a system where doctors monitor their own?
It is a shame that people choose to throw around vague unsubstantiated remarks about people, who through no fault of their own, have a neurological disease. And continue to be in denial of the published literature on biology and treatment.
Hello,
Andrew Kewley, and others, did you see me defending, anywhere, the PACE trial?
You might be better off asking Simon Wessely about the attacks. I don’t understand what you, Dev, are saying, unless you are calling him a liar, or somehow justifying his treatment. I’d like to know who is making “vague unsubstantiated remarks” about people with a disease, too. What do you mean by ‘positive studies’ being due at the end of the year? Do you mean the result is known before the study is published?
No different to the results of Coffins paper (Paprotka et al) being known about before publication. Or Knox et al.
As I never mentioned Simon Wessely I don’t know why you bring him up.
It would be far better that people who wish to suggest that someone has attacked a doctor or research could actually point to an incidence. Otherwise the claims are unsubstantiated. There are plenty from patients regarding attacks by doctors and researchers.
Richard, I believe you said “The implication from this appears, to me, to be that treating CMS as a psychiatric illness is more effective than treating it as, say, a viral one.”
It almost seems as if you had bought the hype.
For a small minority of patients this might be true, depending on the clinical definition used. Some patients likely did improve activity levels, but this must have been offset by adverse effects of the treatment in others.
There have been successful trials of antivirals in subsets of CFS which were associated with particular viruses. So it is questionable whether treating CFS as psychiatric illness is more effective than treating it as a viral one, at least for those subsets.
I’m not sure which field you are from, but let me ask you this: after hearing the reported results of the PACE trial, are you more likely to want to do biomedical research into CFS or less likely? (assume that there is no ‘risk’ of threats)
Are you more likely to want to do such research after learning that the results were overstated and recovery is still rare after such treatments?
Threatening emails and letters are extremely unfortunate, but those on the receiving end are a particular group of psychiatrists and those who choose to be associated with them.
Those biomedical researchers who are committed to researching CFS (rather than a virus for example), almost never have to deal with angry responses from patients and advocates, even when they publish unimpressive results.
CFS has had a credibility problem for years and we should be working to improve credibility and bring research levels up to equitable levels, rather than continuing to air the dirty laundry between a small group of unpopular researchers and a small group of unruly activists. The suffering of long ignored patients is much greater than that of a handful of researchers due to empty threats. Research funding has been a small fraction of what it should have been if you compare the societal impact of disability and economic costs. In what world is that right?
The fact is that the ‘quiet majority’ of sufferers have long sought to have their ‘reasonable’ voices heard and long have they been ignored. These sufferers want more biomedical research and RCTs, simply because non-pharmaceutical treatments do not lead to recovery in most patients. This is what the research has consistently shown, but not what certain psychiatrists are saying.
It is not about stigma against mental diseases, because mental diseases receive far more biomedical research and associated development of pharmaceutical treatments.
Here is my question for you: how can we increase research funding in CFS twenty fold? Because that is where it needs to be to be on an equitable level compared to other diseases.
Dev, Wessely was the subject of the original article I linked to. You should ask him about being attacked.
This is the whole point of the Hawkes piece and the BMJ editorial.
Andrew, we can’t “assume that there is no ‘risk’ of threats” because that is headline-grabber with anything to do with CFS/ME. We might (just might–it is after all a limited pot and something else would have to suffer instead) be able to increase funding if people thinking about the field weren’t put off by that consideration.
That’s a very good point about stigma, by the way.
Richard:
How do you suggest we try to increase funding for CFS/ME, etc many fold to a level that it should be funded at considering how many millions of people are Disabled by this disease in the United States, let alone the world? for over 20 years, the people in the Community have patiently sat at every meeting the federal government has and pleaded for funding, to no avail.So now they have started to ACT UP. just like the AIDS community did. Of course, that makes scientists nervous, But the one thing that the AIDS community showed us — acting up produces funding. and you know what scientists are like when funding is available — all of a sudden they become interested in researching the disease.
if you have a better suggestion — please give it to us.
respecfully submitted.
So the article is about one person being attacked, but no actual examples are given. There really was no point to the item then. It would have been much more interesting to cover the thousands of stories from patients and careers, or even biomedical scientists and doctors who have been attacked or abused.
Now you say people have been put off from entering the field could you name any? Again this is an unsubstantiated claim. Wessely himself has had his name o n several, lets call them fatigue papers, in the last twelve months alone. So he hasn’t left anything behind.
Dear Robert…
”randomized trials treat ….in the aggregate”…..this statement alone shows how much out of your depth you are in attempting to discuss research in general, and the PACE trials in a specific instance.
The PACE trials were so riddled with confounds as to be a meaningless and colossal waste of money. And scientific it was not. It also had nothing to do with ME which yet again another ‘chronicler’, in your person, failed to consider. As a neuroscientist I find much of the commentaries coming out England about CBT and CFS entirely laughable. I am personally dealing with ME and can attest to its devastating impact. Im a highly trained Clinical and Neuropsychologist and can verify that all the evidence one can find regarding the clinical manifestations of ME support the classification of this disease as a neuro-immune disorder. And put simply, you cannot ‘treat’ diseases that are neurophysiological in nature with ‘psychological’ therapies. Such thinking is childish and whimsical and should be cured with a good dose of CBT. Reviewers such as yourself would be well-advised to remain silent. On the other hand, you would be well-advised to study more insightful commentators such as Mr. King of the ”White House Chronicles”
mmp, phd
Hi all,
Mr. Richard P. Grant listens to us and takes us seriously. I bet there would be much less aggressiveness in the CFS community if author’s reactions where like his/yours (depending on who reads this^^).
Sadly, the discussion seem to grow harsh here. But there’s no need for it.
“best overall treatment”. When I was in secure ward, a friend of mine, who studies psychology, visited me and he actually told me that I became a victim of “standardized treatment”. It’s like you say, individual treatment is costly.
But that’s one reason why I find it even more important to be sure, that no CFS patient ever is put in CBT treatment. And the pace trials will just do the opposite. They have non CFS patients but patients who have depression. The seemingly positive results will only further encourage doctors to send their CFs patients to stationary CBT.
There are a few things:
1. This is really important for me. When I was in the early stages of CFS, I really was happy about psychological treatment. There was no stigma for me at all. The symptoms pointed to depression (although some things clearly didn’t fit) and I accepted it. I had absolutely no problem with it.
The therapy also improved my social life tenfold. But it did nothing, not in the least to better my illness.
I just want to say, that the belive “CFS patients don’t want to accept psychological explanations” is wrong. It’s just a prejudice.
After seven years of being ill, I actually started to have depressive episodes. Depressive in the clinical sense. I know what depression is and I would never think it’s not real. I also understand that depression is more a physical than a psychological disease. And nothing to be ashamed of.
It’s just, having experienced both CFS and depression, I can clearly say that I know the difference.
2. You say:
“They want to help CFS sufferers get well, and if it appears to them to be such an illness, then that’s the line they’ll take. I imagine that such a person, faced with new, incontrovertible evidence for a causative agent–a virus, say–would be very happy indeed.”
Well, yes, you would think so. I believe that you honestly would react this way. But believe me, I have often times experienced the opposite.
When the XMRV science paper came out and the hype was big, Simon Wessely said that this research failed to model the role childhood abuse, psychological factors, and other infections may play in the illness.
He even said that it was unimportant if a virus was the cause, because it is irrelevant for the treatment with CBT.
I don’t understand why Simon Wessely is taken serious at all after the Camelford incident. That’s a miracle to me.
3. “’ I also know that attacking people who are trying to help is counterproductive.”
Yes it is. The psychologists taken aside, I think it’s a shame how Dr.Singh was treated by CFS patients after her study. I couldn’t believe it. Really sad.
On the other hand “people trying to help”….
Well you see, it’s like this.
Say, you’re accused of murder, but you are innocent. An excellent lawyer, the best, is your defendant and he says: “We’ll go for murder in the second and I can make a deal with the DA.” And you tell him, “no that’s not okay, I am innocent!”.
And he says: “We both know you’re not innocent. But I’ll get you the best deal!”
Would you really want to have such a lawyer?
The thing is, CBT is based on the assumption that you have wrong illness beliefs. Per definition! Always! So you always know that the person that is “helping” you, doesn’t believe that you have a physical disease. That’s the most ironical thing. CBT is based on the fact that the patient has “wrong illness beliefs”. It’s ridiculous.
and “they want to help people…”. Well I don’t know… I don’t think that the psychological research into CFS is samaritan.
Richard P. Grant said:
“We might (just might–it is after all a limited pot and something else would have to suffer instead) be able to increase funding if people thinking about the field weren’t put off by that consideration.”
The problem is that right now, people with CFS are the ones suffering at the benefit of others. Due to far less research compared to other disease that are more treatable and cause less disability on a societal level.
Perhaps F1000 staff should do a review comparing societal economic costs, levels of disability and levels of research funding (perhaps use NIH funding levels as a proxy)?
It isn’t the researchers that are committed towards continued investigation of the biological etiology who has gotten the bulk of the threats. It is the psychiatrists and a handful of XMRV researchers who published negative studies and are often co-authors with those psychiatrists (and were motivated by interest in the virus, rather than helping CFS patients). Those researchers tend to be put off by the fact that it is extremely difficult to get research funding and advance their careers due to the perception of the field. If you don’t believe me, then you can ask those who have dedicated their career towards it to find out how hard it really is.
By the way, the absence of the discovery of highly specific biomarkers in CFS (biomarkers with reasonable sensitivity have been found), is likely due to lack of research funding.
Research into Crohn’s disease for example, which has recieved 10-15 times the amount of funding has also failed to find specific biomarkers. This is just as unfortunate, but it goes to show that the level of research funding for chronic diseases is simply inadequate.
Apart from some commenters proving my point for me,
“Perhaps F1000 staff should do a review comparing societal economic costs, levels of disability and levels of research funding (perhaps use NIH funding levels as a proxy)?”
is a splendid idea. I don’t know if we could do it (given time, cost, etc.) but it’s certainly something that _should_ be done. I’d have thought it already would have been to be honest.
A quick search throws up this: 10.1002/gps.499
which is UK-centric and from 2001, but claims Alzheimer’s is underfunded in these terms (i.e. economic cost). Other things to look at:
http://www.herc.ox.ac.uk/research/dementia
http://report.nih.gov/rcdc/categories/
There’s a report in http://care.diabetesjournals.org/ too but the link is broken.
So. Yes. There are a number of underfunded (chronic) diseases. I wonder if they suffer from the same perception problem as CFS/ME.