Endogenous pain facilitation rather than inhibition differs between people with CFS, MS, and controls

Posted on 06/01/2017 by wames

Research abstract:

Endogenous pain facilitation rather than inhibition differs between people with Chronic Fatigue Syndrome, Multiple Sclerosis, and controls: An observational study, by Simon M. Collin, Jo Nijs, Mira Meeus, Andrea Polli, Barbara Willekens, Kelly Ickmans in Pain Physician, May 2017, Volume 20, Issue 4 ppE489-E497 [Published 20 May 2017]

Background:
Commonalities in the core symptoms of fatigue and cognitive dysfunction experienced by chronic fatigue syndrome (CFS, also known as ME) and multiple sclerosis (MS) patients have been described. Many CFS and MS patients also experience chronic pain, which has been attributed to central sensitization in both groups of patients. However, the  characteristics of pain in CFS and MS patients have not been compared.

Objectives:
To compare experimental pain measurements in patients with CFS or MS and healthy controls.

Study design:
Observational study.

Setting:
This study took place in Belgium at Vrije Universiteit Brussel and the University of Antwerp.

Methods
Pressure pain thresholds, temporal summation, conditioned pain modulation, and occlusion cuff pressure thresholds rated as painful (1st cuff pressure threshold) and as 3/10 on a verbal numerical scale (2nd cuff pressure threshold) were measured in patients with CFS (n=48), MS (n=19) and healthy pain-free controls (n=30). Adjusted between-group differences were estimated using linear regression models.

Results
Finger pain pressure thresholds of patients with CFS, compared with patients with MS, were 25% lower (difference ratio 0.75 [95% CI 0.59, 0.95], P=0.02) and shoulder pain pressure thresholds were 26% lower (difference ratio 0.74 [0.52, 1.04], P=0.08).

Compared with patients with MS, patients with CFS had 29% lower first cuff pressure threshold (difference ratio 0.71 [0.53, 0.94], P=0.02) and 41% lower 2nd cuff pressure threshold (0.59 [0.41, 0.86], P=0.006). Finger temporal summation was higher in patients with CFS than in patients with MS (mean difference 1.15 [0.33, 1.97], P=0.006), but there were no differences in shoulder temporal summation or conditioned pain modulation at either site.

Differences between patients with CFS and MS tended to be greater than between either patient group and healthy controls. Pain pressure thresholds and cuff pressure thresholds tended to be positively correlated, and temporal summation negatively correlated, with higher physical function and lower fatigue in both groups of patients.

Subjective pain in patients with CFS but not in patients with MS was strongly negatively correlated with pain pressure thresholds and cuff pressure thresholds, and positively correlated with temporal summation.

Limitations:
The main limitations of our study are the relatively small sample sizes, its cross-sectional design, and its exploratory nature.

Conclusions:
We found differences in the characteristics of pain symptoms reported by patients with CFS and patients with MS, which suggest different underlying mechanisms. Specifically, overactive endogenous pain facilitation was characteristic of pain in patients with CFS but not in patients with MS, suggesting a greater role for central sensitization in CFS

Comment: Phoenix Rising Forum

 

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Dr Byron Hyde and ‘the terrible tale of Amy Brown’

Posted on 05/26/2017 by wames

Amy Brown is the pseudonym of an English child whose story is recounted by Dr Byron Hyde, a Canadian doctor who has been actively researching and treating people with ME for decades.

Dr Hyde describes the years 9 year old ‘Amy’ spent visiting many doctors without obtaining an accurate diagnosis, and the diagnosis he reached after her parents requested his help. He believes the story demonstrates:

‘convincing evidence that M.E. , distinct from CFS, is an enteroviral illness. This paper also demonstrates the stages of M.E.  illness… Amy’s story also points out what is generally not discussed, the severe and alarming explosive headaches which can occur at the M.E. disease onset, heralding an acute M.E. encephalopathy.’

Dr Hyde believes in the importance of adequate testing to make an accurate diagnosis. He uses the SEGAMI brain software (a uniform reading and processing environment for all SPECT and PET cameras) to demonstrate the significant hypo-perfusion brain injury of the left temporal region and the cingulate gyrus of the limbic system seen in all his ME patients.

An introduction to the work of Dr Hyde, followed by Amy’s tale can be read on the Health Rising website: The Doctors and Mr. Hyde: Amy Brown’s M.E Enterovirus Story

Dr Hyde founded the The Nightingale Research Foundation,  a Canadian registered charitable organization dedicated to the study and treatment of Myalgic Encephalomyelitis (M.E.) and Chronic Fatigue Syndrome (CFS) and related illnesses.

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A comparison of neuroimaging abnormalities in MS, Depression & CFS (ME)

Posted on 05/25/2017 by wames

Article abstract:

A Comparison of Neuroimaging Abnormalities in Multiple Sclerosis, Major Depression and Chronic Fatigue Syndrome (Myalgic Encephalomyelitis): is There a Common Cause?, by Gerwyn Morris, Michael Berk, Basant K Puri in Mol Neurobiol. pp 1-18 [Published online 17 May 2017]

There is copious evidence of abnormalities in resting-state functional network connectivity states, grey and white matter pathology and impaired cerebral perfusion in patients afforded a diagnosis of multiple sclerosis, major depression or chronic fatigue syndrome (CFS) (myalgic encephalomyelitis).

Systemic inflammation may well be a major element explaining such findings. Inter-patient and inter-illness variations in neuroimaging findings may arise at least in part from regional genetic, epigenetic and environmental variations in the functions of microglia and astrocytes.

Regional differences in neuronal resistance to oxidative and inflammatory insults and in the performance of antioxidant defences in the central nervous system may also play a role.

Importantly, replicated experimental findings suggest that the use of high-resolution SPECT imaging may have the capacity to differentiate patients afforded a diagnosis of CFS from those with a diagnosis of depression. Further research involving this form of neuroimaging appears warranted in an attempt to overcome the problem of aetiologically heterogeneous cohorts which probably explain conflicting findings produced by investigative teams active in this field. However, the ionising radiation and relative lack of sensitivity involved probably preclude its use as a routine diagnostic tool.

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Incidence of ME/CFS among U.S. nurses

Posted on 05/24/2017 by wames

Research abstract:

Incidence of myalgic encephalomyelitis/chronic fatigue syndrome in a large prospective cohort of U.S. nurses, by Natalia Palacios, Kathryn C. Fitzgerald, Anthony L. Komaroff, Alberto Ascherio in Fatigue: Biomedicine, Health & Behavior [Published online: 18 May 2017]

Background:

The incidence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), the rates of both under-diagnosis and over-diagnosis, and the nature of the onset of the condition have not been assessed in large studies of health professionals.

Purpose

To determine the cumulative incidence of ME/CFS in a large population of health professionals, to examine the nature of the onset of the illness, and to estimate the frequency of both over-diagnosis and under-diagnosis of ME/CFS.

Methods

We sent an email questionnaire to participants in the Nurses’ Health Study II (NHS II), a large prospective cohort of female nurses.

Forty-two thousand three hundred and ninety-four women completed the questionnaire, which included the 1994 Centers for Disease Control and Prevention (CDC) criteria for ME/CFS.

Results

One-hundred and two women (240 per 100,000 surveyed) developed an illness that met criteria for ME/CFS between 1989 and 2009. The onset of ME/CFS was gradual in 40.6%, sudden (following flu-like illness or other precipitating events) in 18.8%, followed emotional or physical trauma in 32.3%, and was uncertain in the rest. Under-diagnosis was common: only 15 (15%) of the women who met criteria for ME/CFS reported having been diagnosed. Over-diagnosis also was common: four times as many subjects had been diagnosed with ME/CFS by community doctors as actually met criteria. The distribution of symptoms was not different in comparing cases with a sudden onset to those with a gradual onset.

Conclusions

In this large cohort of female nurses, we found a low cumulative incidence of ME/CFS. Over-diagnosis and under-diagnosis were high, even in this medically sophisticated population.

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For children with ME, school education can be a grave threat

Posted on 05/24/2017 by wames

Third Force News blog post, by Lesley Scott, 19 May 2017: For children with ME, school education can be a grave threat

Lesley Scott explains why the Scottish Government presumption that attending school is always best can affect the health of children with ME

Extract:

For children and young people with this illness, insistence on school attendance as required through the Scottish national framework GIRFEC (Getting it Right for Every Child), can impede recovery and is a key cause of deterioration and relapse often to a greater severity. Many children miss out completely on education when, with a more appropriate response, they could have maintained education and recovered their health more quickly. For children with ME, what is known as energy efficient education, such as home education, home tuition, distance or virtual learning, can maximise achievement whilst protecting health.

Education provision needs to fit the child, not the other way around.

Lesley Scott is Scottish officer for the Young ME Sufferers (Tymes) Trust

Read the full article

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WAMES fundraising challenge – could you be a regular donor?

Posted on 05/24/2017 by wames

WAMES fundraising challenge – could you be a regular donor?

WAMES needs a sustainable income, one we can rely on long term. Unfortunately nearly everything we do costs money.

Currently we are spending a lot of time applying for grants, but:

  • this means we take time out from campaigning, updating the website,  producing the magazine etc.
  • few funders offer grants for running costs and campaign costs and some only give a proportion of a project’s costs.

Running costs: 20% of WAMES expenditure
Campaign costs: 45% of WAMES expenditure

Could you become a regular donor?

  • by setting up a Direct Debit with your bank – large or small
  • organising a regular fundraising activity
  • donating a percentage of earnings from your hobby e.g. sale of cakes or fudge, greeting cards, plants, babysitting, tutoring
  • raise funds every time you shop by signing up to Easy fundraising http://www.easyfundraising.org.uk/

Find out how to donate

Fundraising ideas

 

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Once again, the PACE authors respond to concerns with empty answers

Posted on 05/23/2017 by wames

Article abstract:

Once again, the PACE authors respond to concerns with empty answers, by David Tuller in Journal of Health Psychology [Published April 27, 2017]

In their response to Geraghty, the PACE investigators state that they have “repeatedly addressed” the various methodological concerns raised about the trial. While this is true, these responses have repeatedly failed to provide satisfactory explanations for the trial’s very serious flaws.

This commentary examines how the current response once again demonstrates the ways in which the investigators avoid acknowledging the obvious problems with PACE and offer non-answers instead—arguments that fall apart quickly under scrutiny.

 

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#HelpNHSbeMEaware challenge is not just for ME Awareness week!

Posted on 05/23/2017 by wames

Thanks to those who have let us know they have been writing to their Health Boards with their experiences of NHS staff who don’t understand ME, and asking for training and awareness sessions for them.

It is not too late if you wish to join in. Help WAMES demonstrate how desperate the need for awareness raising is, so Health Boards see how important it is not to delay the launch of a training programme any longer.

Read about the campaign: ME awareness: join the WAMES Help NHS be ME aware campaign

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WAMES news blog & social media update

Posted on 05/22/2017 by wames

There will be a reduced service on the WAMES news blog and social media between June and August 2017.

WAMES has regretfully had to take this decision due to a reduction in the number of hours work that volunteers can give us over the summer.

Through the blog and social media we aim to keep you up to date with breaking news in the ME world, and also news and events in Wales which are of interest to people with ME, their families and carers. We will endeavour to post key items of interest, whenever we can.

Our website and social media are just some of the ways we work to achieve the purpose of WAMES – to improve the quality of life of people with ME, their families and carers.

Contact Jan if you would like to join WAMES as a digital volunteer. jan@wames.org.uk

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PACE-GATE: An alternative view on a study with a poor trial protocol

Posted on 05/22/2017 by wames

Article abstract:

PACE-GATE: An alternative view on a study with a poor trial protocol by Bart Stouten in Journal of Health Psychology [Published 12 May 2017]

The controversies surrounding the effectiveness of cognitive behavioural therapy and graded exercise therapy for chronic fatigue syndrome are explained using Cohen’s d effect sizes rather than arbitrary thresholds for ‘success’.

This article shows that the treatment effects vanish when switching to objective outcomes. The preference for subjective outcomes by the PACE trial team leads to false hope. This article provides a more realistic view, which will help patients and their doctors to evaluate the pros and cons.

Extract from conclusion:

Conclusion: where to go from here?

The results above lead me to conclude that White et al. systematically overestimate the effectiveness of CBT because they focus on subjective rather than objective outcomes.

Their vigorous defence of their findings gives me the impression that they are not open to constructive criticism. This understanding is strengthened by their statement that Geraghty misunderstands and misrepresents their work, without providing sound evidence. I would appreciate a more constructive debate, where they attempt to understand why others do not share their views, and subsequently advance findings in this field in a more scientific way.

Given the evidence that the objective improvements reported for CBT and GET are at most modest, I agree with Geraghty that these should be downgraded to adjunct support-level status.

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