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Making sense of fatigue - Julia Newton editorial in Occupational Medicine

Dolphin

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Some would argue that CFS/ME is a distinct clinical entity but we would suggest that CFS/ME is the extreme end of the chronic fatigue spectrum
I missed this when I read the article. It is a bad sign. Anyway I haven't lost faith with them because of other research they have published (if they were judged just on this paper then, yes, I wouldn't have much faith in them).
 
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I think the problem with the current paper is that the authors wanted to highlight the physical side of fatigue; however, they also didn't want to be too non-psychological and leave themselves open for criticism. The easiest way to do this was "give in" a bit on "CFS/ME".

But I think Julia Newton has produced some really good research on ME/CFS - the sort of research we really need. She has also a collection of studies which again is good i.e. rather than a research group doing one but not building on it.
I agree that Julia Newton has done good work on Autonomic aspects of ME/CFS, especially Orthostatic intolerance and your point about the value of researchers developing an area (rather than hopping from one inconclusive finding to another) is spot on. She's also stressed how with some illnesses, such as PBC, fatigue is primarily physiological in origin - which is why I'm so suprised she seems willing to group all types of fatigue together in a spectrum. But hey, she's entitled to her views on that, they don't alter her own research findings and she did make some very good points about doctors tending to see all fatigue through psychological lenses.
 

pictureofhealth

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Their reply is stunningly good in my view.

They have responded swiftly and politely and from a position of experience of dealing with a number of physical disorders where fatigue is predominant - not just ME (ie they already know more than enough about fatigue thank you very much).

They have addressed the major issue of what is currently out of balance and skewed in favour of a psychological approach to ME treatment in the UK. In fact they have neatly used some of Prof W's arguments in return, ie they present a 2 sided approach and ask him to participate in order to redress the balance in favour of an increased biomedical approach.

They have suggested autonomic and cardiovascular assessments for ME patients in the UK NHS clinics.

If he really thinks there is no dividing line between mental and physical - how could he refuse?

This is a superb letter.
 

Sean

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It is amazing how vigilant [Wessely] is and how quickly he jumps on these things.
He is, above all else, a master propagandist, a political salesman. That is where his real skill lies, and he is very, very good at it, as we know all too well.

I note also how many of the references he cited in support of his arguments were papers by him.

Also, he regurgitates his usual schtick about how he has conducted research into biological aspects (cortisol, immune markers, etc), but really this is just stuff to try to back the psych view. If he was serious about the biological stuff he would be doing proper exercise and cardiac studies, EEG, and a whole lot of other stuff.


And well said, Esther.
 

Cort

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While clearly demonstrating the importance of psychosocial factors, these results should not be seen as evidence of chronic fatigue being a mere consequence of psychiatric distress; there is ample research demonstrating this is not the case [3,8]. Nor should they be seen as diminishing the potential impact of biological factors. We have previously demonstrated changes in immune system activity [9], cortisol levels [10] and autonomic reactivity [11] among those with chronic fatigue, but unfortunately to date attempts to identity a consistent pattern of biological abnormalities, have failed [12–14].
Isn't this kind of an amazing statement by Wesselly. Isn't he saying there that his model really doesn't fit and that more research is needed?
 

IamME

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Regarding Julia Newton's research and her "spectrum of fatigue", you might be interested to see this...

http://www.ncl.ac.uk/icm/research/publication/71614

Home orthostatic training in chronic fatigue syndrome - a randomized, placebo-controlled feasibility study 2010

Thirty-eight patients with CFS (Fukuda Criteria) were randomly allocated to daily tilt training ... for 6 months. ... Two patients (one from each arm) withdrew from the study. Fourteen patients in each group complied completely or partially, and patients found the training manageable and achievable. ... There was no significant difference in fatigue between groups at 4 weeks ... but there was a trend towards improvement in fatigue at 6 months. Compliers had lower fatigue compared to non-compliers.

HOT is well tolerated and generally complied with. [...] An adequately powered study including strategies to enhance compliance is warranted.
Right, so exertional intolerance is all due to NMH -- we obviously knew that anyway. Furthermore, NMH is all or mainly due to faulty conditioning, ie deconditioning, deconditioned standing. Finally, increased daily orthostasis for 6 months -- of course it was obvious this was feasible.

Well, that's that sorted then.

What do you mean, you're not happy?

Here's the full text...

://onlinelibrary.wiley.com/doi/10.1111/j.1365-2362.2009.02225.x/full

Subjects were excluded if ... inability to stand for up to 40 min due to muscular or neurological disorders
I don't know anyone with genuine ME/CFIDS who could stand for 40 minutes (even if leaning against a wall) every day without rapid deterioration. And it goes without saying it's impossible and probably dangerous for pwME with cardiac dysfunction. So once again, severely affected sufferers, even moderately affected sufferers this time, are shafted.

Subjects within HOT arm were asked to stand with their upper back against a wall and their heels approximately 15 centimetres (cm) from the wall with a cushioned drop zone. They were asked to maintain this position without movement for up to 40 min or until they experienced symptoms.
Measurements included impedence cardiography but don't know if this was exactly the same technique of measurement as Cheney uses.

This just seems like more of the, "for the people who could do it it was okay". So what?

Most patients attended for appointments at weeks 1 and 4, but 10 patients were dropped out after failing to attend for the 6-month assessment, which suggests that we need to find further strategies to keep patients engaged with the therapy.
So, no suggestion that the therapy may be completely inappropriate for them, may have been making them worse?!


The 40% of misdiagnosed cases she's excluded is the tip of the iceberg... The curse of the fatigue misnomer strikes again.

If this is where Newton's "good" research is going then I for one, don't need her and don't want her and at the very best she offers me nothing. Didn't it even bother her that "patients with muscular/neuro disoders" (ie ME/CFIDS!) precluding standing were the ones most in need of help and yet the very ones she was blithely excluding? Never more has this "stuff" being researched seemed like two separate diseases.

Incidentally this also cements my suspicions around NMH being that it's no more than a fancy term for deconditioning, or at least there's nothing about it that precludes that interpretation.
 

urbantravels

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Most patients attended for appointments at weeks 1 and 4, but 10 patients were dropped out after failing to attend for the 6-month assessment, which suggests that we need to find further strategies to keep patients engaged with the therapy.
"The beatings will continue until morale improves."
 

Dolphin

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I get suspicious/don't like it when doctors starting concentrating too much on non-pharmacological treatments. It can end up with blaming the patient.

Fortunately Julia Newton also uses drugs e.g.

Single centre experience of ivabradine in postural orthostatic tachycardia syndrome.

Europace. 2010 Nov 9. [Epub ahead of print]

McDonald C, Frith J, Newton JL.

Institute for Ageing and Health, UK NIHR Biomedical Research Centre in Ageing and Age-related Diseases-Cardiovascular theme & Falls and Syncope Service, Newcastle University, Newcastle, UK.

Abstract
Aims Postural orthostatic tachycardia syndrome (POTS) is associated with tachycardia on orthostasis. Patients frequently report palpitations, presyncope, and fatigue. Conventional therapy is effective in less than 60%. Case reports suggest ivabradine (a selective sinus node blocker, with no effect on blood pressure) may alleviate POTS-related symptoms. This is a retrospective case-series. Methods and results Postural orthostatic tachycardia syndrome patients prescribed ivabradine were identified from the pharmacy database. Case notes were reviewed and participants completed a symptom assessment tool. Twenty-two patients were identified. Data were available from 20. Eight patients reported reduced tachycardia and fatigue and four reported only reduced tachycardia. The most common reason for discontinuing ivabradine was lack of efficacy (n = 6). Five patients reported side-effects resulting in two discontinuing treatment. Conclusion This retrospective case series indicates that 60% of patients treated with ivabradine report a symptomatic improvement. A randomized controlled trial accessing the efficacy of ivabradine in POTS is indicated, particularly in patients resistant to, or intolerant of, conventional therapy.

PMID: 21062792 [PubMed - as supplied by publisher]
 

biophile

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I agree with IamME's criticism. The study's methods and conclusions are circular.

Newton's group: "They were asked to maintain this position without movement for up to 40 min or until they experienced symptoms." I didn't know that even mildly affected CFS patients (supposedly with NMH in this study) who can tolerate some standing if they really have to could actually stand up for any length of time without any symptom worsening at all, not to mention 40 minutes.

urbantravels says: "The beatings will continue until morale improves."
Hehe!
 

Dolphin

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Desdinova

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Isn't this kind of an amazing statement by Wesselly. Isn't he saying there that his model really doesn't fit and that more research is needed?
It seems that he is saying that yes there are biological factors in CFS/ME. But that they are to random from person to person to be useful in conformation of CFS/ME and as being caused by something like a virus, bacteria, fungus, etc. And as such the psychosocial mind body theory being the easiest answer is the logical choice as to causation until such a strictly physical cause is found.

Which is status quo since with the current thinking among the medical community towards CFS/ME as a mental disorder further research towards a cause validating it being a physical disorder would be pointless? End result things stay right where they are.
 
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It seems that he is saying that yes there are biological factors in CFS/ME. But that they are to random from person to person to be useful in conformation of CFS/ME and as being caused by something like a virus, bacteria, fungus, etc. And as such the psychosocial mind body theory being the easiest answer is the logical choice as to causation until such a strictly physical cause is found.

Which is status quo since with the current thinking among the medical community towards CFS/ME as a mental disorder further research towards a cause validating it being a physical disorder would be pointless? End result things stay right where they are.
And all based on false premises in the first place.
 

Cort

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We have previously demonstrated changes in immune system activity [9], cortisol levels [10] and autonomic reactivity [11] among those with chronic fatigue, but unfortunately to date attempts to identity a consistent pattern of biological abnormalities, have failed [12–14].
I would disagree with his last statement; what about cortisol?, NK cell activity, oxidative stress, low blood volume, RNase L abnormalities....I'm sure that I've missed some.....
 

Cort

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Newton and Jones observe that the direction of causation between emotional distress and fatigue has been difficult to disentangle. This is true, but we would highlight the results of recent prospective studies using British birth cohorts which have shown that those with self-reported chronic fatigue syndrome (CFS) had high rates of psychiatric disorder well before the onset of their fatigue symptoms [2]. We also note that other prospective studies have demonstrated that fatigue can occur without psychological distress and that emotional problems may occur as a consequence of chronic fatigue [3].
This just shows what a mess the field is on both ends...he said no consistent biological abnormalities but as he points out here (indirectly) there are no consistent psychological abnormalities either....

some studies show high(er?) rates of psych disorders (not sure about that but) CFS also occurs without psychological distress and that whatever emotional problems that do occur can occur as a result of CFS; as a result of having a physiological condition (otherwise why put it that way??).

This reminds of the CDC's personality study...yes rates of personality disorders were increased in CFS but most people with CFS did not have them..... (yet the title of the article was 'increased rates in CFS - which was true altho the more salient fact might be - 70% of people with CFS or whatever it was - do not have them....)
 

Dolphin

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some studies show high(er?) rates of psych disorders (not sure about that but) CFS also occurs without psychological distress and that whatever emotional problems that do occur can occur as a result of CFS; as a result of having a physiological condition (otherwise why put it that way??).

This reminds of the CDC's personality study...yes rates of personality disorders were increased in CFS but most people with CFS did not have them..... (yet the title of the article was 'increased rates in CFS - which was true altho the more salient fact might be - 70% of people with CFS or whatever it was - do not have them....)
I agree with you regarding the personality study.

Unfortunately there are worse figures out there than the personality study:

Psychosom Med. 2009 Jun;71(5):557-65. Epub 2009 May 4.

Psychiatric comorbidity in persons with chronic fatigue syndrome identified from the Georgia population.

Nater UM, Lin JM, Maloney EM, Jones JF, Tian H, Boneva RS, Raison CL, Reeves WC, Heim C.

Chronic Viral Diseases Branch, National Center for Zoonotic, Vector-borne and Enteric Diseases, Centers for Disease Control and Prevention, Atlanta, GA 30333, USA.

Comment in:

Psychosom Med. 2010 Jun;72(5):506-7; author reply 507-9.

Abstract
OBJECTIVE: To compare the prevalence of psychiatric disorders in persons with chronic fatigue syndrome (CFS) identified from the general population and a chronically ill group of people presenting with subsyndromic CFS-like illness ("insufficient symptoms or fatigue" (ISF)). Previous studies in CFS patients from primary and tertiary care clinics have found high rates of psychiatric disturbance, but this may reflect referral bias rather than true patterns of comorbidity with CFS.

METHODS: We used random digit dialing to identify unwell individuals. A detailed telephone interview identified those with CFS-like illness. These individuals participated in a 1-day clinical evaluation to confirm CFS or ISF status. We identified 113 cases of CFS and 264 persons with ISF. To identify current and lifetime psychiatric disorders, participants completed the Structured Clinical Interview for DSM-IV.

RESULTS: Sixty-four persons (57%) with CFS had at least one current psychiatric diagnosis, in contrast to 118 persons (45%) with ISF. One hundred one persons (89%) with CFS had at least one lifetime psychiatric diagnosis compared with 208 persons (79%) with ISF. Of note, only 11 persons (9.8%) with CFS and 25 persons (9.5%) with ISF reported having seen a mental healthcare specialist during the past 6 months.

CONCLUSIONS: Our findings indicate that current and lifetime psychiatric disorders commonly accompany CFS in the general population. Most CFS cases with comorbid psychiatric conditions had not sought appropriate help during the past 6 months. These results demonstrate an urgent need to address psychiatric disorders in the clinical care of CFS cases.

PMID: 19414619 [PubMed - indexed for MEDLINE]