Trial By Error: Now There’s CBT for ‘Health Anxiety’ in CFS

By David Tuller, DrPH

In late December, the International Journal of Clinical and Health Psychology published an article called “Prevalence and treatment of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and co-morbid severe health anxiety.” This paper, from investigators at the University of Bath and Oxford University, actually included two separate studies documenting the purported relationship between a construct called “health anxiety” and CFS/ME, as the investigators currently refer to the illness in question.

The first study described in the paper is a cross-sectional survey of health anxiety and symptoms in CFS/ME patients. (An acknowledged limitation of cross-sectional data is that they document associations only and do not provide evidence of causation.) The second study described in the paper involves the delivery of a specialized treatment—a cognitive behavior therapy approach that addresses health anxiety, called CBT-HA—to ten patients.

As far as I can tell, the animating hypothesis is more or less the same as that behind the PACE trial, except in this case the psychological entity that is presumed to inhibit patients from engaging in activity is called “health anxiety” rather than something called “fear avoidance.” Health anxiety seems to be essentially a friendlier, less derogatory name for hypochondriasis. Here is how the investigators describe the basis for their intervention:

“CBT-HA is based on the notion that ambiguous health-related stimuli are subject to interpretation which hence informs behavioural responses such as hypervigilance to physiological sensations, avoidance, bodily monitoring and reassurance seeking in order to prevent realisation of health concerns. However, these strategies often increase distress.

This all sounds pretty much like the notions embodied in the PACE approach. Am I missing something? Is there a substantive difference here?

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What Is Health Anxiety?

For the new study, health anxiety was measured according to a 14-item instrument published in 2002. On the scale, higher total scores represent greater overall health anxiety. For each question, each consecutive answer receives a higher score. Here are two examples of the included questions:

a) I do not worry about my health.
b) I occasionally worry about my health.
c) I spend much of my time worrying about my health.
d) I spend most of my time worrying about my health.

a) As a rule I am not aware of bodily sensations or changes.
b) Sometimes I am aware of bodily sensations or changes.
c) I am often aware of bodily sensations or changes.
d) I am constantly aware of bodily sensations or changes.

These questions might make sense for assessing health anxiety in some contexts. But anyone with CFS/ME will likely spend more time worrying about their health and more time being aware of their bodily sensations than those who are well. That would rate them higher on the health anxiety scale. Yet all it means is they have understandable concerns and anxieties about their health, given their serious medical condition.

In both the health anxiety and fear avoidance formulations, the choice to avoid engagement in activity is posited as leading to negative health outcomes. Here is how it is explained in the current paper:

“We suggest that due to largely unexplained physical sensations, lack of effective reassurance from medical practitioners (due to the condition being poorly understood) and the complex anxiety provoking and problematic nature of managing fatigue, some patients with CFS/ME may be prone to employing strategies to prevent worsening of symptoms such as restricting and/or avoidance of physical activity, paying attention to ‘warning signs’ or excessively resting as part of a health anxiety cycle, subsequently resulting in lower levels of physical functioning and fatigue on exertion.”

And here’s an explanation of the therapeutic intervention:

“In CBT-HA, cognitions related to health concerns (e.g., I will collapse) trigger behavioural responses designed to prevent the feared outcome. However, these (safety seeking) behaviours (SSB) serve to prevent disconfirmation of the feared outcome, thus reinforcing the behaviour through operant mechanisms…

The CBT-HA formulation draws out the unintended consequences of the SSB (e.g., anxiety/frustration, intensified pain/deconditioning) and how these further reinforce fear of ‘collapse’, for example. This creates a vicious self-reinforcing cycle of distress which is maintained by SSB originally employed to reduce the likelihood of physical collapse or other feared outcome.”

This statement is like a reprise of the paradigm developed throughout the 1990s, complete with the purported “vicious self-reinforcing cycle,” that resulted in the PACE trial. The description does seem to include some other terminology, such as “SSB.” Perhaps that’s an effort to present the hypothesis as an intellectual or conceptual advance demanding exploration and its own funding stream.

Let’s be clear: This paper reads not like an intellectual or conceptual advance but like a copycat version of the PACE approach, which has already failed to live up to its claims. In recognition of that failure, more than 100+ international experts signed Virology Blog’s open letter to The Lancet about the PACE study’s “unacceptable methodological lapses” and the US Centers for Disease Control and Prevention dropped the PACE-inspired recommendations.

To be fair, the investigators of this study note that the intervention is not based on the assumption that health anxiety explains all the symptoms of the illness. They also acknowledge that stigmatization of patients and related factors could themselves increase health anxiety. But these cautionary statements play a secondary role to suggestions that symptoms of the illness are amplified and exacerbated by health anxiety and that health anxiety should therefore be a specific target of intervention.

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The Theoretical Framework for CBT-HA

The impression that CBT-HA is simply the PACE CBT strategy in lipstick and a tutu is reinforced by a review of the theoretical framework of the intervention, as outlined in a 2017 paper. In that paper, two Bath University investigators described how a single patient successfully completed the CBT-HA therapy course and showed improvement on self-reported measures. That triumph paved the way for the case series described in the recent publication.

In 2017, here’s how the investigators explained their thinking:

1. Cognitive beliefs relating to CFS and CFS symptoms inform behavioural strategies that maintain CFS. Targeted cognitive restructuring (and associated behavioural experiments) will lead to a reduction in the 100% conviction that specific behaviours (i.e., SSB) are necessary to prevent a worsening of CFS, and that a worsening will lead to collapse.

2. Symptoms of CFS (specifically fatigue and pain) are maintained by behavioural strategies that are designed to prevent worsening of (CFS) symptoms. Extinction of specific strategies identified in the formulation will lead to an improvement in the primary physical symptoms of fatigue (Chalder Fatigue Scale) and pain (VAS).

3. The health-focused anxiety serves to exacerbate the CFS symptoms and vice versa; therefore, addressing both within an integrated approach will lead to reductions in both CFS symptoms (Chalder Fatigue Scale) and health anxiety (health anxiety inventory) as well as improvements in functioning (SF-36) and self-efficacy (self-efficacy scale).

Let’s be clear. This is a hypothesis. As with PACE’s similar claims, there is no credible evidence that “health-focused anxiety serves to exacerbate” the course of the illness. The investigators apparently believe that their new paper provides that credible evidence. It does not. Interestingly, they do not mention or cite PACE. Nor do they mention that the PACE results were either null or explainable by placebo effects when assessed by the methods promised in the protocol. (I was a co-author of the PACE-debunking paper.)

(At this point, I suppose it makes sense for other investigators, even former supporters of the PACE trial, to avoid all mention of it. PACE is indefensible as a piece of science. It will forever be the study in which participants could get worse on key outcome measures and still be found to have achieved “recovery.” It has been put to its best use at Berkeley, where my colleagues have assigned it in epidemiology seminars as a case study of awful research.)

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The Unsurprising Study Results

But I digress. Here is how the investigators describe the results of the paper’s first study–the cross-sectional analysis:

“Findings from study one indicate that health anxiety in CFS/ME is common and significantly associated with symptom severity. Participants with high health anxiety were more fatigued, anxious and depressed, demonstrating lower levels of physical functioning than those without.”

This makes sense. If patients are experiencing severe symptoms that are questioned by doctors, family and friends, they could certainly experience high levels of anxiety about their health. In the absence of evidence beyond hypothetical speculations and anecdotal observations, it is unwarranted to believe these data indicate that “health-focused anxiety serves to exacerbate the CFS symptoms.” Many smart observers would view the data and assume that any causal relationships are likely to run in the opposite direction.

The second study involved offering patients the 12-session CBT-HA intervention, delivered by the lead investigator, and testing them on various self-reported measures at the start and finish of treatment. Of 10 who began the program, two dropped out—a 20% rate of loss-to-follow-up. Those who remained reported various improvements on questionnaires.

It should not be surprising that patients who spent many hours one-on-one with a sympathetic therapist reported on questionnaires that they felt better and were less anxious. That is especially so if they were assured that the intervention they received could improve their health and make them feel better, as occurred as part of the CBT delivered in PACE and related trials.

Moreover, the final assessments were made at the time of the last session–the point at which participants were most likely to be maximally biased in favor of the intervention. It is common that reported positive effects in such studies wear off after weeks or months, when the impact of any bias is likely to have dwindled. With such a tiny sample and in the absence of a comparison group, such findings tell us very little if anything about actual treatment effects, if any.

Unblinded research relying on self-reported findings can be quite successful at altering questionnaire-response behavior, especially in the context of a positive therapeutic relationship. These kinds of subjective reports are essentially artifacts of the study design more than signs of any genuine improvement. This point is highlighted by the tendency of any apparent therapeutic benefits to wear off in follow-up studies as well as by the consistent failure of objective outcomes, such as number of steps taken as measured by actimeters, to support the self-reported findings.

In advocating for a randomized controlled trial, the investigators assert that it “would generate further evidence to support the utility of CBT-HA in CFS/ME.” This is an odd statement. The purpose of a clinical trial is to examine whether something does or does not happen, not to prove what is already known to be true. In this case, the investigators have virtually promised that a full trial would provide “further evidence to support the utility” of their custom-tailored intervention. That categorical declaration suggests the kind of allegiance to a pre-determined outcome that can seriously undermine the objectivity and integrity of scientific research.

Comments on this entry are closed.

  • Ellie 2 July 2020, 2:49 am

    Thanks David,

    I hope this “study” isn’t a test balloon for more scarce research funding to be thrown down the drain using a rebrand of CBT.

    The cognitive gymnastics undertaken by this cabal of researchers to continue on their path would be fascinating if it wasn’t so dreadfully damaging.

    The patient harm and money wasted, which could be much better spent, is incalculable.

  • Janice Johnson 2 July 2020, 3:30 am

    Would they say the same things to someone who suffered burns? Oh your behaviour response (avoiding sticking your hand in a fire because it hurt and damaged your hands each time you did it previously) is resulting in lower levels of functioning …

    Couldn’t possibly be that after over maybe two decades of living with the consequences of ignoring triggers, we have now learned what makes us worse. Permanently worse. And we avoid those activities. Now that sounds like common sense to me. Whereas keeping repeating the same harmful behaviour, keeping getting the same painful and relapse consequences sounds like crass stupidity.

  • Kim Wilson 2 July 2020, 3:43 am

    Wow…as I was reading this it sounded like they were educated on ME ( except for dubious ‘largely unexplained”) , but by the time I got to the end of the super looong sentence I realized they were sneakily contradicting everything that came before it

    “We suggest that due to largely unexplained physical sensations, lack of effective reassurance from medical practitioners (due to the condition being poorly understood) and the complex anxiety provoking and problematic nature of managing fatigue, some patients with CFS/ME may be prone to employing strategies to prevent worsening of symptoms such as restricting and/or avoidance of physical activity, paying attention to ‘warning signs’ or excessively resting as part of a health anxiety cycle, subsequently resulting in lower levels of physical functioning and fatigue on exertion.”

    they have reduced EVERYTHING above the words “health anxiety cycle” to being part of a health anxiety cycle, it appears

    The point they are making makes no sense lol. It’s A conclusion to make but given the way they came to it it doesn’t have any scientific foundation whatsover and appears to, again, someone, somehwere deciding ‘it’s all in our head’. I’d like to see them live in my body for even one morning, as it’s been 26 years for me and like many with MECFS I only go to the doctor to get a pain killer script for my lactic acid muscle pain, which isn’t , ahem, ‘ largely unexplained’ but scientifically proven and anti biotics when I get an ear infection. Everything else, I just stay home because the Post exertional malaise isn’t worth the trip. To further explain and procpve I’m not a hypochondriac I recenlty had an ultrasound done in foot and my big toe is severly damagesd…..It has bothered me iff and on since I was 7 ( due to one foot being bigger ) but I never complained about it only pointed it out to ballet teacher that i couodn’t bend toe back ( i quit ballet which I had only just started ). We aren’t complainers, we are the opposite. If we worry about our health it’s because it’s generally pointless to bother mentioning anything to the dr!

  • Runar Østerdahl 2 July 2020, 3:45 am

    What these studies fail to identity is the fact that many of the patients were healthy and had no negative expectations towards activity at one point. My daughter was a very active soccer player until the day she became ill. It was a very sudden onset with fever and subsequently fatigue and all she longed for was getting back to the sport. Two years later the situation is the same, yet now physicians want to explain her inability to train by “worrying about collapse”. I find this very interesting as a HPC myself, as I’m used to at least having some sort of logical rationale for my decisions. How is her situation today due to avoiding activity when her situation weeks after onset clearly wasn’t? She still pushes towards social activity as much as possible even if that means days and weeks with increased pain and fatigue, so reading these articles gives no associations towards our reality

  • Paul Fox 2 July 2020, 3:47 am

    Thank you, David, for continuing to expose this eyewash.

    As you say, “it is unwarranted to believe these data indicate that “health-focused anxiety serves to exacerbate the CFS symptoms.” Many smart observers would view the data and assume that any causal relationships are likely to run in the opposite direction.” Those observers would readily recognise that any illness whatsoever that impairs, or even potentially impairs, a person’s abilities will cause anxiety. Thus, these logically semi-literate (at best) “investigators” confuse effect with cause. Any primary-school child has surely come home with the tale of the boy who was asked why he stood in the garden sprinkling salt and said that it was to keep tigers away (or similar). As there were no tigers, his method was proven. If small children understand that such an assertion is ridiculous, how come senior academics base their papers on such nonsense? Surely, that is because they can get away (or is it that they are required to do it?) with it in their institutions, and in their professional communities. That says a great deal about the state of the academic and health”care” sectors of the UK.

  • Diane Kirk 2 July 2020, 3:48 am

    Wow! How can these ‘Researchers’ be so far from reality and logic, not to mention ignoring all M.E research-based knowledge of the illness. This smacks of them trying to keep themselves in jobs and cheap ‘treatment’ options for the Uk Government.

  • CT 2 July 2020, 4:02 am

    “Many smart observers would view the data and assume that any causal relationships are likely to run in the opposite direction. ”
    I’d say that you don’t have to be smart to do this, you just have to be an empathetic human with some emotional intelligence.

    With respect to the SHAI questionnaire, aren’t they using a threshold score of 18 or above for ‘health anxiety’? If so, how is it that all those who completed treatment are reported to be below the clinical threshold when the mean score at the end of therapy was 14.30 but the SD (presumably standard deviation?) was 11.38 (Table 4)? Surely the SD can’t take the score higher than the threshold if they all recovered?
    Can someone help me out here or set me straight?

  • Kim Wilson 2 July 2020, 4:08 am

    You know what makes me anxious?

    The idea that this belief could one day reach my Dr …THEN what do I do when I drag myself there for something other than a painkiller script? Then I end up being dismissed as making stuff up to seek “reassurance” which apparently is “ineffective” lol…

    You know what would be reassuring? To not be looked at like a hypochondriac by a dr when there is something physically wrong

    But for some reason people with MECFS don’t deserve the benefit of the doubt. We are to be assumed to be feeling better than we say. IF THEY ONLY KNEW

    26 years of thus BS…still waiting to be treated like a physically ill human being by society…I stopped holding my hopeful breath after the first month…in 1994

  • Janine 2 July 2020, 4:08 am

    The publishers of this paper have two blind spots in their research approach. Firstly they need to get up to date with the biomedical nature of ME/CFS. They refer frequently to fatigue as the symptom they are dealing with whereas ME /CFS presents with a much wider range of debilitating symptoms which are becoming better documented.
    Secondly they need to understand the importance of causation. Anyone with a chronic fluctuating condition is inevitably aware of changes in their body as that is the nature of their life. It doesn’t necessarily mean they have “health anxiety” – the pain comes first.
    This paper reads like something from a Victorian novel. Can we please move into the 21st century and on from patient blaming and shaming. It is this approach which generates anxiety in the patients I know.

  • Lyn Gillam 2 July 2020, 4:11 am

    Thank you for continuing to call these charlatans out David.

    I have a “health anxiety” at the top of any measurable scale that the uk medics will never move away from their mis-cognitions about ME owing to this school of researchers continuing to hold sway with their eminence over evidence campaign!

    Their membership stacking of the new NICE guidelines assessment panel does nothing to alleviate that fear.

    I do wish they would go practice their anxiety methods on themselves …so they could comprehend they are putting their own loss of professional status concerns above patient welfare.

    Plus ca change from this crowd …PACE by any other name smells as foul….

  • EV 2 July 2020, 4:38 am

    Person who is literally on fire 24/7 thinks about the fact they are on fire 24/7… Lets push them to have therapy for their fear of fire! Oh, wait, how about we put the damn fire out instead…?

    Every action I do impacts every other action. I need to be on top of my body’s responses and feelings and on top of managing them and stopping damaging activity. If I didn’t register as a D in both of those questions then I’m harming myself by not being aware of my body, which actually is damaged and needs TLC. Pretending that isn’t the case is just, once again, dismissive of the illness and the patients who suffer it.

    No, this doesn’t mean I can’t enjoy my life because I’m too busy worrying about my health constantly…. it means I am a human who multitasks and pays attention to more than 1 thing at a time!

  • Grete Budalen 2 July 2020, 4:45 am

    I have to laugh when I read this. It’s so funny that grown up people actually get paid to do such a bad job. And they have a job they think about as serious.
    And they say the people with ME/CFS is imagine things?
    If I hade anxiety to do something I would not becom as ill as I am. And I forget it every time I have five minutes lighter symptoms.
    My mother died of canser. She was afraid, thinking of her illness all the time. Was isolating her self when she was thretend. Because she was afraid of getting a bug. All people understand that. But I’m living with my illness that take my life avay. A bug can set me back for weeks and months. That’s not anxiety but a fact. To mutch activity will give me PEM. That’s not anxiety but something we learn by experiencing. And it’s proven to be a fact by the real resachers.
    To the researchers that did that bulshit paper. Stop pretending to be a working person. It’s all in your head and you don’t understand what my body is going through.

  • Lady Shambles 2 July 2020, 5:34 am

    The truly “vicious self-reinforcing cycle,” is that created by the psyches and their hangers on who promulgate this nonsense so that doctors who should be doing their jobs as per GMC guidance no longer do so. For example: a supposed ‘SFPN ‘Expert’ ‘ neurologist who refuses a punch biopsy to diagnose SFPN on the basis that ‘people like you don’t have a positive result so we don’t do them’ (yes that infamous BPS back to front logic has now fully integrated with the brains of UK neurologists) . Allowing for the lunacy that this implies an ability to diagnose a pathology within the body by clairvoyance & that an in any case an ‘expert’ should only be called an expert if they know what they’re doing, what this leads to is patients being accused that their pain is somehow imagined and self-perpetuated due to health anxiety. Refusing the gold standard test based on groundless dogma is malfeasant. That matters not whether the result would have been positive or negative. Of course when the result *is* positive that provides easy grounds for a complaint doesn’t it?
    I think people with any disease that isn’t being served properly because of BPS/MUS/LTC precepts should start to complain more.

  • Anil van der Zee 2 July 2020, 6:13 am

    Sad to see these type of researchers pushing their own experiences with anxieties on patients.

  • CT 2 July 2020, 6:30 am

    Patients with any anxiety conditions or who have anxiety on their medical records are damned before they set foot in the doctor’s room. There’s a name for this (apart from stigmatization) – what is it? Oh yes, ‘diagnostic overshadowing’ – the denial of biomedical care to patients on the grounds that their symptoms reflect their mental health condition, special needs or level of IQ which is seen as overriding. Like in this paper -https://adc.bmj.com/content/103/Suppl_2/A13.2 – perhaps? There seems to be a persistent blindness to the potential of discriminating against vulnerable people/groups.

  • Kinsey Frace 2 July 2020, 7:28 am

    Aside from just the gaslighting harm this ‘hypothesis’ will cause, this sort of thinking is causing real harm to CFS patients in the NHS. This study’s hypothesis is quite reflective of the current state of behaviour towards patients in the UK. In practice, once a CFS/fibromyalgia diagnosis (these two disease entities are conflated and treated by the same “specialist” centres of “occupational therapists” who administer group health-education-courses and possibly a part-time GP with an “interest” in ME) is received (often with only one or two differential diagnoses tested for), we are treated as if any new physical symptoms we bring to our GPs are simply us becoming hypervigilant over our bodies. This is so dangerous. We are effectively treated as immune from any new diseases. 10 years we ruled out cancer, so no need to check that new symptom now, stop being a hypochondriac. 5 years ago we did a single non-fasting blood test, but you have CFS, so no need to monitor for the development of it now, no matter that you have a strong family history of type-2 diabetes.

    My GP missed meningitis, because it’s “just your CFS symptoms”.

    CFS diagnosis added an additional 8 years onto my path to severe endometriosis diagnosis (a total of 30 years of suffering).

    Going without treatment or support for ME is bad enough, but being put into a category that prevents appropriate testing and diagnosis of new symptoms is dangerous. The continued view of ME symptoms as psychologically linked is dangerous. These hypotheses are dangerous.

  • Lisa 2 July 2020, 7:37 am

    The question of the new term health anxiety is just one of a legion of instances in this field of old wine in new bottles, with new labels! Part of it’s intentional gaslighting, so if hysteria acquires a bad reputation then it’s conversion disorder, when that’s still too Freudian, it’s functional neurological syndrome. Whatever sounds more science-y. The rest is a thinly disguised attempt to escape association with research that’s been discredited and to avoid having to refer to anything but a small handful of publications whose authors are in the same sub-field. And when that sub-field is psychosomatic medicine, you never need to be troubled by the expectation of rigorous study design or use of evidence. It’s all just make believe.

  • Morny Wright 2 July 2020, 7:39 am

    There are so many fundimental misunderstandings of the disease, upon which they base their findings, that it would be laughably ridiculous, were it not for the damage such clap-trap could do to the already poor clinical provision and mindblowing ignorance of those health professionals that we rely on to take care of us.

  • Revel 2 July 2020, 8:42 am

    . . . and back in the real world of pwME in the UK:

    a) I do not worry about the wanton ignorance of the Bath and Oxford academics
    b) l occasionally worry about the wanton ignorance of the Bath and Oxford academics
    c) l spend much of my time worrying about the wanton ignorance of the Bath and Oxford academics
    d) l spend most of my time worrying about the wanton ignorance of the Bath and Oxford academics

    Thank you, once again, Dr David Tuller for calling them out on this nonsense.

  • jimells 2 July 2020, 9:51 am

    A therapist’s fact-free reassurance that there really was a homeless men’s shelter in my county did nothing for my “health anxiety”.

    A few years later the Society Security Benefit Notice instantly cured my “health anxiety”, as it allowed me to settle an attempt to seize my home, and to buy the necessities of life.

    I wonder how long these parasites could survive on no income or social support. A lot less time than any ME patient, I’m sure.

  • A. Gill 2 July 2020, 10:54 am

    Professor Paul Garner, Liverpool School of Tropical Medicine, Director of the Centre for Evidence Synthesis in Global Health and Co-ordinating Editor of the Cochrane Infectious Diseases Group, is writing a regular BMJ blog detailing his experiences of having Coronavirus and the post-viral aftermath. In his latest blog (23 June), he states:

    “A post-viral tsunami is hitting our health services right now, yet in the UK it doesn’t even seem to be on the national agenda. NICE have issued 28 rapid reviews and guidance on covid-19 this year, but their guidance on the chronic fatigue syndrome/mylagic encephalomyelitis is 13 years old. There is little evidence in the UK of a co-ordinated response, that is truly multidisciplinary, involves organizations such as the ME Association, and includes patients.

    Society is acknowledging the “long haulers” but part of the picture is missing. What about people less privileged than us articulate middle classes mobilising ourselves, writing to MPs, and talking to journalists? What about the minority groups, the single parent households, people on zero hours contracts, where long convalescence is not an option? These people are trying to navigate an illness that bites back like a demon if you overdo it, batters you physically and mentally, and leads you to doubt your own sanity. Pushing themselves because they have no choice will lead to further illness, suffering, and distress. They are being left behind.

    This stuff is real. People are ill. Doctors need to stop diagnosing this as anxiety. We have messed up before, lets’ not do it again with long term covid-19 illness.”

    Full article: https://blogs.bmj.com/bmj/2020/06/23/paul-garner-covid-19-at-14-weeks-phantom-speed-cameras-unknown-limits-and-harsh-penalties/

  • Kirsty Hall 2 July 2020, 10:56 am

    I’m not ‘worried’ about my health, I’m ANNOYED by it! There is a big difference but I expect it’s one these ‘researchers’ aren’t competent enough to recognise.

  • Anja Olergård 2 July 2020, 10:57 am

    In my 25 years of ME I have _never_ met or even heard of anybody who lets fear of collapse hinder them from activity. We all do too much! I know of _noone_ who lies in bed more than they have to, who avoids life. I have never heard of these people the researchers describe.

    The premise of this study seems to be, yet again, that there is nothing physically wrong with us. If so, we must indeed get help to stop letting false illness beliefs decondition us and instead break the fetter to our bed. But the evidence is by now quite overwhelming, that there IS something physically wrong with us and our illness beliefs are not wrong. They were not wrong before a biomarker was found, and they will not be false when all the answers about ME will be found. We are not a stupid herd of cattle who influence each other in Facebook groups to call our life anxiety a physical illness so we can avoid working, being useful, making a difference, seeing family and friends, having sex, playing the piano, painting, baking, laughing. I got sick before Facebook, actually even before I had Internet, so it does not spread that way. I am also probably on par with some of these researchers’ IQ. My illness beliefs must be taken seriously. I am not a lump of flesh with a head full of stupid thoughts that destroy my life. Give me more credit than that.

    If a person with a broken leg in a cast was forced to jump off a 10 feet wall, would he not be hyper aware and hyper vigilant, and spend time worrying about how the jump would impact his broken leg? And would his hesitance not be considered healthy? Nobody would have him go through CBT to cure his fear of jumping.

    Fine, if there are people out there with idiopathic fatigue and actual health anxiety who can benefit from this kind of help, good for them. But the main symptom of ME is post-exertional malaise, and that is not a false illness belief, it is a measurable, physical disability, which cannot disappear by thinking differently any more than the person with a broken leg can heal it by overcoming fears or anxiety. Research done on “tired people” cannot be applied on people with ME. Just like somebody with a sun burned nose should not be treated for skin cancer. Keep illnesses apart. Don’t treat a physical illness like it is a fault in one’s mind. The fault is in these researchers’ minds.

  • Richard Vallee 2 July 2020, 10:59 am

    At this point it’s clear that the problems are systemic and reveal that there is effectively no quality control in so-called evidence-based medicine. It’s a free-for-all system where people-who-cosplay-as-researchers can say whatever they want, contradict themselves multiple times in the span of a single sentence, and literally recycle claims over and over again by altering them slightly, search-and-replace research in addition to copy-paste.

    Evidence-based medicine is broken beyond repair. That it allows such mediocre nonsense to be presented as serious likely indicates that nothing produced under this system is reliable, all it does is enable woo and quackery to pass through the same system, effectively corrupting the entire output. The whole saying is “a few bad apples spoil the whole bunch”. The bunch is completely spoiled after decades of ignoring the weird smell and leaky runoff.

    This will be a boon to alternative medicine and it will badly hurt moving forward with a freaking pandemic. How can anyone trust what medical authorities say when they allow this astrology-level mutual admiration society to destroy millions of lives without a care? This is criminal incompetence, plain and simple. No wonder medicine has stalled in improving patient outcomes, this is the reason. Evidence-based medicine must be dismantled, it has proven itself to be equally corrupt and incompetent.

    Also Jo Daniels has completely disqualified herself from the NICE proceedings and should be expelled from it with similar prejudice as she has shown us. She had already shown as such but this is beyond absurd, as unethical as inviting HIV deniers onto major AIDS committees. The crisis of replicability is now clearly a crisis of validity. The people in charge have lost the plot, the medics are no better than shamans and snake oil peddlers.

  • Lady Shambles 2 July 2020, 11:16 am

    RV says: “Also Jo Daniels has completely disqualified herself from the NICE proceedings and should be expelled from it with similar prejudice as she has shown us. She had already shown as such but this is beyond absurd, as unethical as inviting HIV deniers onto major AIDS committees.”

    Quite so. I wonder if anyone is well enough to compose a letter to NICE wrt this concern to which patients and carers could add their names? Direct action is required.

  • Janet MacLennan 2 July 2020, 4:48 pm

    Yikes. Fucking scary..they’re still at it.

  • Brooke S 2 July 2020, 6:47 pm

    Why is always Oxford? This is so embarrassing.

    It’s a shame as well. If they were as motivated to find treatment as they are to discredit patients, they could have cured thousands of people by now.

  • tygrus 2 July 2020, 8:21 pm

    Patient vs some doctors:
    * Feeling like a lack of energy or a lack of oxygen .. just ignore it!
    * Aches and pains including headache .. just ignore it!
    * Collapsed on the ground unconscious .. just ignore it!
    * You look alright now and we have no abnormal test results .. so it just vasovagal syncope, somehow your brain did it, or dehydrated..!
    * It takes much longer for HR & BP to return to normal than expected if it was just vasovagal syncope .. sorry that’s not in the textbook, the patient must be exaggerating the symptoms!
    * It takes the rest of the day and night to mostly recover, sometimes several days to feel normal again .. that’s not listed for vasovagal syncope so you’re just a malingerer with Health Anxiety!
    * The future is patient centred care with patients receiving more education, providing feedback and patients more involved with their own management .. patient is not an expert so should be ignored!

  • Kati D 3 July 2020, 1:38 am

    ME is targeted by the psychs and psychologists because it is an easy prey and they can still push their assertions through peer review and journals who still do not know better. The ecosystem surrounding these assertions include the lack of education of physicians, the lack of structure of the medical system to systematically research ME and embrace it within a medical specialty. The insurance industry. The lack of biomarkers. The psych lobby taking advantage, having done so for decades now. The lack of funding for research from governmental agencies. The ever-lasting stigma in society and its perpetuation and aggravation in health care. Patients traumatized by the care they have received (or not received) while being struck with a disease that will torment and torture them for the rest of their lives. Such publications from psych lobby is absolutely gaslighting for the patient community, and in term this distress is feeding the creative minds of these researchers who plan further psychological treatments. At this point, i really wish that these so-called researcher could experience the disease for themselves and have a taste of their own medicine, to experience what it is like to live with ME- in this current context of a (mostly) hostile health care system, ineffective and often times harmful therapies. While we’re at it, please experience what it’s like to fight for your disability insurance for years on end and having to deal with the inability to pay your rent, cook your meals or even wash yourself while your doctor who has not learnt a thing about ME in med school, says there is nothing wrong with you.

  • Barb M 3 July 2020, 12:04 pm

    What gets me is that IRBs/ethical review boards keep approving studies like this. Seems like a huge problem that their IRBs aren’t protecting the participants in these studies. “Research” like this doesn’t happen in a vacuum.

  • Martin 3 July 2020, 6:57 pm

    Some transcripts from the Late Dr Gordon Skinner, MD DSc, virologist and researching faulty TSH T4 and T3 tests and B12 in patients with ME/CFS who was brought before the GMC several times not by his patients a lot who improved or recovered, but by doctors who could not see sense. He died 5 years ago from a stroke brought on by distress due to all the hassle intervening his serious research. RIP my doctor.
    https://www.tpauk.com/main/article/transcripts-of-the-gmc-hearings-relating-to-the-late-dr-gordon-skinner/

  • Martin 4 July 2020, 8:03 pm

    They say at the beginning of the paper that ME/CFS is suspected of being caused by genetic predisposition, somatic and BPS factors. They obviously do not think it is a serious disease or illness at all.

  • AD 6 July 2020, 6:48 am

    This CBT for health anxiety publication result is not surprising. This type of research has been funded for years, in fact decades, and certain charities have still collaborated closely with those who cause harm to ME sufferers and provide the “patient support” for this research. They claim they are advocating for biomedical science and ending the stigma of ME whilst in fact causing the stigma and bad BPS science on CFS such as this.

    This research is being conducted by Jo Daniels of Bath University part of the BPS proponents who has worked closely with the so-called Bristol based “ME” charity, AfME, that has been involved in and provided “patient support” for the PACE trial scandal for decades. Many patients have also been duped into donating to them.

    They are also responsible for the much of the BPS studies such as Shopping Bag Study also from Jo Daniels and Bath University . This research is just a small part of the wider CMRC agenda which is now being funded for this Decode ME (rehashed MEGA) by UK Government which appears on the face of it less BPS and more biomedical to pacify and mollify patients for the next four years.

    Here is some more video information on Jo Daniels with her collaboration of AfME and Unrest/ME Action. It is very deceptive and a must watch video!
    https://vimeo.com/245352517

    More BPS research and comment from Opposing MEGA in the link below.
    https://www.virology.ws/2020/06/25/trial-by-error-uk-funds-genetics-project-my-letter-to-codes-investigators/

  • DE 10 July 2020, 12:20 pm

    This CBT for health anxiety publication result is not surprising. This type of research has been funded for years, in fact decades, and certain charities have still collaborated closely with those who cause harm to ME sufferers and provide the “patient support” for this research. They claim they are advocating for biomedical science and ending the stigma of ME whilst in fact causing the stigma and bad BPS science on CFS such as this.

    This research is being conducted by Jo Daniels of Bath University part of the BPS proponents who has worked closely with the so-called Bristol based “ME” charity, AfME, that has been involved in and provided “patient support” for the PACE trial scandal for decades. Many patients have also been duped into donating to them.

    They are also responsible for the much of the BPS studies such as Shopping Bag Study also from Jo Daniels and Bath University . This research is just a small part of the wider CMRC agenda which is now being funded for this Decode ME (rehashed MEGA) by UK Government which appears on the face of it less BPS and more biomedical to pacify and mollify patients for the next four years.

    Here is some more video information on Jo Daniels with her collaboration of AfME & Unrest/ME Action. It is very deceptive and a must watch video!
    https://vimeo.com/245352517

    More BPS research and comment from Opposing MEGA in the link below.
    https://www.virology.ws/2020/06/25/trial-by-error-uk-funds-genetics-project-my-letter-to-codes-investigators/

  • lucie webb 11 July 2020, 4:34 am

    I have just spent a week reading the trial of Dr Gordon Skinner – see Martin’s link above. It was a week well spent. My TMJ dentist is currently undergoing a Fitness to Practise with the General Dental Council. Another bunch of dinosaurs.

  • DE 17 July 2020, 12:08 pm

    This CBT for health anxiety publication result is not surprising. This type of research has been funded for years, in fact decades, and certain charities have still collaborated closely with those who cause harm to ME sufferers and provide the “patient support” for this research. They claim they are advocating for biomedical science and ending the stigma of ME whilst in fact causing the stigma and bad BPS science on CFS such as this.

    This research is being conducted by Jo Daniels of Bath University part of the BPS proponents who has worked closely with the so-called Bristol based “ME” charity, AfME, that has been involved in and provided “patient support” for the PACE trial scandal for decades. Many patients have also been duped into donating to them.

    They are also responsible for the much of the BPS studies such as Shopping Bag Study also from Jo Daniels and Bath University . This research is just a small part of the wider CMRC agenda which is now being funded for this Decode ME (rehashed MEGA) by UK Government which appears on the face of it less BPS and more biomedical to pacify and mollify patients for the next four years.

    Here is some more video information on Jo Daniels with her collaboration of AfME and Unrest/ME Action. It is very deceptive and a must watch video!
    https://vimeo.com/245352517

    More BPS research and comment from Opposing MEGA in the link below.
    https://www.virology.ws/2020/06/25/trial-by-error-uk-funds-genetics-project-my-letter-to-codes-investigators/