• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Making sense of fatigue - Julia Newton editorial in Occupational Medicine

helsbells

Senior Member
Messages
302
Location
UK
It sounds to me like he just doesn't like anyone attempting to divorce the mind body connection. Otherwise he becomes redundant, or relegated to an appropriate supportive role. My NHS phych. was the same he just wouldn't have that your state of mind didn't influence your health no matter how many times I tried to explain it was the opposite I reacted to something, or experienced dysautonomia, my tissues were being starved of oxygen therefore I was physiologically being put into fight or flight so it sounds to me like he is just saying the same old thing. Thanks for posting this though, she wouldn't see me and I was wondering what her approach was and now I know this is treatment I have access to elsewhere so thanks for that :D
 

Dolphin

Senior Member
Messages
17,567
I was wondering what her approach was and now I know this is treatment I have access to elsewhere so thanks for that :D
It's a bit abstract. I know she uses various drugs that aren't mentioned in the piece. I would be interested in seeing the full Simon Wessely reply too.
 

Desdinova

Senior Member
Messages
276
Location
USA
I would be interested in seeing the full Simon Wessely reply too.
So would I. But if I was to guess it would be something along the lines of

Blah Blah Blah Blah........ Such ideas are a Dangerous line of thought...... Blah Blah Blah Blah......... reinforces or encourages false beliefs and notions in patients as to their illness and symptoms.... Blah Blah Blah Blah...... offers them false hope.... Blah Blah Blah Blah...... and puts patients health at risk by taking them off the path to improved health via the processes and treatments that are proven to work GET, CBT and pharmaceuticals.... Blah Blah Blah Blah......
 

Dolphin

Senior Member
Messages
17,567
So would I. But if I was to guess it would be something along the lines of

Blah Blah Blah Blah........ Such ideas are a Dangerous line of thought...... Blah Blah Blah Blah......... reinforces or encourages false beliefs and notions in patients as to their illness and symptoms.... Blah Blah Blah Blah...... offers them false hope.... Blah Blah Blah Blah...... and puts patients health at risk by taking them off the path to improved health via the processes and treatments that are proven to work GET, CBT and pharmaceuticals.... Blah Blah Blah Blah......
Yes. :D
The thing is that too many comments like that could influence/intimidate her a bit with regard to ME/CFS. "Power" is centralised for ME/CFS in the UK with the clinical champions and services. Also treatments are only supposed to the be the ones that NICE recommends [GET and GET-based CBT]. She operates with one part of her in the system but also does a lot outside the system.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
Not especially helpful for ME/CFS because of the view that this is not a distinct disease but merely the extreme end of a bell curve. But many good points, especially sleep disturbance and ANS dysfunction and that psychology is not the only explanation (and I really do love the warning to be careful not to fail before you begin, and I love it all the better since Harvey and Wessely hate it... she who finds herself "the enemy of [he who chose to be] my enemy is my friend" Sun Tzu's Art of War).

I'm really happy that someone is looking into CF and IF. All those people in the middle of the bell curve do deserve some intervention. :thumbsup: Sometime when I have some brain cells I think I'll write the correspondence author and thank her for this (and send her some info about the particular disease of ME).
 

helsbells

Senior Member
Messages
302
Location
UK
Yes. :D
The thing is that too many comments like that could influence/intimidate her a bit with regard to ME/CFS. "Power" is centralised for ME/CFS in the UK with the clinical champions and services. Also treatments are only supposed to the be the ones that NICE recommends [GET and GET-based CBT]. She operates with one part of her in the system but also does a lot outside the system.

Yes I suppose it could be read like that Wesseleys veiled attempt to take power from anyone who is positing an alternative hypothesis to himself - he would be particularly concerned (threatened) as she works within the NHS were he is used to the monopoly. It is amazing how vigilant he is and how quickly he jumps on these things.
 

helsbells

Senior Member
Messages
302
Location
UK
It's a bit abstract. I know she uses various drugs that aren't mentioned in the piece. I would be interested in seeing the full Simon Wessely reply too.

I did try to find this out as she wouldn't see me.
 

oceanblue

Guest
Messages
1,383
Location
UK
It sounds to me like he just doesn't like anyone attempting to divorce the mind body connection. Otherwise he becomes redundant, or relegated to an appropriate supportive role.

That's brilliant! Perfectly sums up how things should be...
 

pictureofhealth

XMRV - L'Agent du Jour
Messages
534
Location
Europe
Both the ME Association (MEA) in the UK and ME Research UK (MERUK) have funded biomedical research projects by Julia Newton.

1. The MEA have posted the above article by Dr Newton on their website too, with the following comment:

"NB: The MEA Ramsay Research Fund is funding Professor Newton to carry out research into muscle function at a cellular level in ME/CFS."

2. The link below from MERUK shows recently completed projects.

If you scroll down to the 6th and 8th project, you will find Julia Newton's projects relating to POTS (postural orthostatic tachycardia) and Autonomic Dysfunction in ME/CFS.

http://www.meresearch.org.uk/research/projects/completed.html
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
Here is the letter.

Harvey said:
Making sense of fatigue: the need for a balanced approach

1. Samuel B. Harvey1,
2. Arnstein Mykletun2,3 and
3. Simon Wessely1

Dear Sir,

In their recent editorial on fatigue, Newton and Jones [1] comment that ‘the majority of primary care physicians believe that fatigue arises as a consequence of psychological rather than physical factors’ and imply that this may lead physicians to ‘fail before they begin’. They also go on to discuss a biological approach to the investigation and treatment of fatigue, highlighting the need to consider fatigue as ‘real’. While we agree with the need to consider biological processes in fatigued individuals, we contest that any approach that dichotomises the mind and body by focusing exclusively on either the biological or psychosocial aspects of fatigue ignores the current evidence base and is likely to be sub-optimal. We also strongly refute any suggestion that psychological disorders are any less ‘real’ than somatic conditions.

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]. Randomized control studies have established the effectiveness of cognitive and behavioural focussed therapies in both CFS and fatigue associated with somatic illnesses, such as rheumatoid arthritis, multiple sclerosis and cancer [4–7]. 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].

Given this evidence, and the recent recommendations from the UK National Institute of Clinical Excellence [15], we were surprised that Newton and Jones made no mention of psychological factors when they discussed the assessment and management of fatigue. While it is obviously important to consider physical causes, a simple mental state examination remains one of the most productive investigations in prolonged fatigue [5,16]. We agree that a better understanding of the biological aspects of fatigue is essential and share Newton and Jones’ hope that this will lead to novel treatment options. However, we would suggest caution in recommending the widespread use of pharmaceutical treatments based on small (n = 21) open label trials [17], especially given the strong evidence base for other non-pharmacological interventions.

The references quote rather messily I'm afraid.
 

oceanblue

Guest
Messages
1,383
Location
UK
Both the ME Association (MEA) in the UK and ME Research UK (MERUK) have funded biomedical research projects by Julia Newton.

That's why I was surprised that her editorial should doubt the existence of ME as a separate illness:

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

And thanks for the letter text, snow leopard.
 

Desdinova

Senior Member
Messages
276
Location
USA
The UK government has hidden behind the mind body defense for ME/CFS for a long time. This could be a preparation to have something in line to build upon and roll with should the campaign to stop XMRV and other MLV’s fail. This way it turns out to be body mind (not the other way around which as others have pointed out has Weasel and Co. so upset) but is just a part of the Chronic Fatigue spectrum.

Since Chronic Fatigue is caused and found in relations to many disorders they can continue to downplay and deny the seriousness of this Disorder. And keep pushing the tools already set up for ME/CFS GET, CBT, AD’s, Sleep aids etc. When the ME/CFS community protests and insists that they the UK government and others are downplaying the seriousness and severity of the illness the government can play them off as being Whiners obsessed with their illness. Who think that their illness is more serious than any and all other disorders (They’re Special ) thus they’re selfish and blow the severity of our illness out of proportion.
 

Dolphin

Senior Member
Messages
17,567
References for Harvey et al. letter

References for Harvey et al. letter

References

1. Newton JL, Jones DE. Making sense of fatigue. Occup Med
(Lond) 2010;60:326-329.
2. Harvey SB, Wadsworth M, Wessely S, Hotopf M. The relationship
between prior psychiatric disorder and chronic fatigue:
evidence from a national birth cohort study. Psychol
Med 2008;38:933-940.
3. Harvey SB,Wessely S, Kuh D, Hotopf M. The relationship
between fatigue and psychiatric disorders: evidence for
the concept of neurasthenia. J Psychosom Res 2009;66:
445-454.
4. Armes J, Chalder T, Addington-Hall J, Richardson A,
Hotopf M. A randomized controlled trial to evaluate the effectiveness
of a brief, behaviorally oriented intervention for
cancer-related fatigue. Cancer 2007;110:1385-1395.
5. Harvey SB, Wessely S. Chronic fatigue syndrome: identifying
zebras amongst the horses. BMC Med 2009;7:58.
6. Neill J,BelanI,RiedK.Effectiveness ofnon-pharmacological
interventions for fatigue in adults with multiple sclerosis,
rheumatoid arthritis, or systemic lupus erythematosus:
a systematic review. J Adv Nurs 2006;56:617-635.
7. Rimes KA, Chalder T. Treatments for chronic fatigue syndrome.
Occup Med (Lond) 2005;55:32-39.
8. Hickie I, Koschera A, Hadzi-Pavlovic D, Bennett B,
Lloyd A. The temporal stability and co-morbidity of prolonged
fatigue: a longitudinal study in primary care. Psychol
Med 1999;29:855-861.
9. Skowera A, Cleare A, Blair D, Bevis L, Wessely SC,
Peakman M. High levels of type 2 cytokine-producing cells
in chronic fatigue syndrome. Clin Exp Immunol 2004;135:
294-302.
10. Cleare AJ, Blair D, Chambers S, Wessely S. Urinary free
cortisol in chronic fatigue syndrome. Am J Psychiatry
2001;158:641-643.
11. Winkler AS, Blair D, Marsden JT, Peters TJ, Wessely S,
Cleare AJ. Autonomic function and serum erythropoietin
levels in chronic fatigue syndrome. J Psychosom Res 2004;56:
179-183.
12. Cleare AJ. The HPA axis and the genesis of chronic
fatigue syndrome. Trends Endocrinol Metab 2004;15:55-59.
13. Harvey SB, Wessely S. Tired all the time: can new
research on fatigue help clinicians? Br J Gen Pract 2009;59:
237-239.
14. Lyall M, Peakman M, Wessely S. A systematic review
and critical evaluation of the immunology of chronic
fatigue syndrome. J Psychosom Res 2003;55:79-
90.
15. NICE. Chronic Fatigue Syndrome/Myalgic Encephalomylitis
(or Encephalopathy). Diagnosis and Management of CFS/
ME in Adults and Children. London: National Institute of
Clinical Excellence, 2007.
16. Manu P, Matthews DA, Lane TJ. The mental health of patients
with a chief complaint of chronic fatigue. A prospective
evaluation and follow-up. Arch Intern Med 1988;
148:2213-2217.
17. Jones DE, Newton JL. An open study of modafinil for
the treatment of daytime somnolence and fatigue in
primary biliary cirrhosis. Aliment Pharmacol Ther 2007;25:
471-476.
 

Dolphin

Senior Member
Messages
17,567
Newton and Jones reply

Newton and Jones reply

Reply

We thank Dr Harvey and colleagues for their comments
regarding our recent editorial [1]. In fact, we believe that
we are reaching, albeit from different directions, the same
conclusion that fatigue is a complex symptom and that it
is frequently multifactorial requiring a multidisciplinary
approach to management.

We were disappointed at the suggestion that we might
'dichotomise mind and body' particularly as our editorial
clearly states that depression and anxiety are key factors
that are important to manage in patients with fatigue.
Furthermore, our published work underlines that our
clinical management strategies (that quantitatively improve
quality of life in fatigued patients [2]) include assessment
of both physical as well as fatigue-associated
psychological parameters [3-5].

The manner in which Harvey et al. pose their response
to our editorial could be interpreted as underlining what
a proportion of the patient population believe happens in
clinical practice in the UK, where when patients present
with fatigue, the diagnostic paradigm assumes that their
symptoms are primarily psychological in origin rather
than physical. Our editorial was aimed at readdressing
this imbalance or simply to suggest that there may be
an alternative argument.

As a cardiovascular physiologist and immunologist, we
have come to understand the impact that fatigue has for
our patients in the context of chronic diseases, particularly
the autoimmune liver disease and primary biliary cirrhosis
(PBC) where fatigue is accepted by the clinical
community to be biological in its origin [6-10]. Of
course, there are psychological consequences of the debilitating
symptom of fatigue, but studies strongly support
that in PBC, this is a secondary rather than a primary
phenomena [11].

As physicians whose interest is in the physical aspects
of fatigue, we are happy to acknowledge the importance of
psychological as well as physical factors in fatigue and utilise
psychological assessment tools in our normal clinical
practice. Perhaps, in the spirit of this new desire for a balanced
approach, we should review whether all clinics perform
formal autonomic assessment or a 12-lead ECG in
their patients who present with fatigue.

Julia L. Newton and
David E. J. Jones

UK National Institute for Health Research Biomedical
Research Centre, Newcastle University
e-mail: Julia.Newton@nuth.nhs.uk

References
1. Newton JL, Jones DE. Making sense of fatigue. Occup Med
(Lond) 2010;60:326-329.
2. Jones DEJ, Sutcliffe K, Pairman J, Wilton K, Newton JL. An
Integrated care pathway improves quality of life in primary
biliary cirrhosis. Q J Med 2008;101:535-543.
3. Newton JL, Jones DE, Henderson E et al. Fatigue in nonalcoholic
fatty liver disease (NAFLD) is significant and
associates with inactivity and excessive daytime sleepiness
but not with liver disease severity or insulin resistance.
Gut 2008;57:807-813.
4. Newton JL, Jones DEJ. The population prevalence of autonomic
dysfunction and daytime somnolence in primary
biliary cirrhosis. Hepatology 2007;47:1496-1505.
5. Newton JL, Jones DEJ, Brown A, Sheerin N. Fatigue in
early renal disease. Br J Ren Med 2009;14:10-14.
6. Cauch-Dudek K, Abbey S, Stewart DE, Heathcote EJ.
Fatigue in primary biliary cirrhosis. Gut 1998;43:705-710.
7. Prince MI, James OFW, Holland NP, Jones DEJ. Validation
of a fatigue impact score in primary biliary cirrhosis: towards
astandardforclinicalandtrialuse.JHepatol2000;32:368-373.
8. Huet PM, Deslauriers J, Tran A, Faucher C,
Charbonneau J. Impact of fatigue on the quality of life in
patients with primary biliary cirrhosis. Am J Gastroenterol
2000;95:760-767.
9. Goldblatt J, Taylor PJS, Lipman Tet al. The true impact of
fatigue in primary biliary cirrhosis: a population study. Gastroenterology
2002;122:1235-1241.
10. Newton JL, Bhala N, Burt JA, Jones DEJ. Characterisation
of the associations and impact of symptoms in primary
biliary cirrhosis using a disease specific quality of life
measure. J Hepatol 2006;44:776-783.
11. Van Os E, Van den Broek WW, Mulder PGH, ter Borg PC,
Bruijn JA, van Buuren HR. Depression in primary biliary
cirrhosis and primary sclerosing cholangitis. J Hepatol
2007;46:1099-1103.
 

Dolphin

Senior Member
Messages
17,567
I liked these bits in the Newton and Jones reply:

"The manner in which Harvey et al. pose their response
to our editorial could be interpreted as underlining what
a proportion of the patient population believe happens in
clinical practice in the UK, where when patients present
with fatigue, the diagnostic paradigm assumes that their
symptoms are primarily psychological in origin rather
than physical."
--

"As physicians whose interest is in the physical aspects
of fatigue, we are happy to acknowledge the importance of
psychological as well as physical factors in fatigue and utilise
psychological assessment tools in our normal clinical
practice. Perhaps, in the spirit of this new desire for a balanced
approach, we should review whether all clinics perform
formal autonomic assessment or a 12-lead ECG in
their patients who present with fatigue."
 
Messages
13,774
Their reply has got bite.

I wish Wessely would have then replied again. I feel like a lot of what's gone wrong with the way CFS has been treated is because there's not been enough of the sort of relentless debate that forces people to clarify their arguments to the nth degree. It's easy to sound vaguely sophisticated and enlightened for 1000 words and then go back to being a quack for the rest of your career.
 

Dolphin

Senior Member
Messages
17,567
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 particularly liked this one:
http://forums.aboutmecfs.org/showth...al-regulation-by-.......&highlight=phosphorus which ties together muscle abnormalities and the autonomic system which have often been investigated separately. I will admit that I don't full understand it (one excuse is that I stopped studying biology aged 16). I have to admit I have a soft spot for any research finding "muscle abnormalities" particularly any associated with exercise.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
Their reply has got bite.

I wish Wessely would have then replied again. I feel like a lot of what's gone wrong with the way CFS has been treated is because there's not been enough of the sort of relentless debate that forces people to clarify their arguments to the nth degree. It's easy to sound vaguely sophisticated and enlightened for 1000 words and then go back to being a quack for the rest of your career.

Excellent point