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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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UK, The Times, 23 Apr: 'Biological breakthrough offers fresh hope to ME sufferers

Discussion in 'General ME/CFS News' started by filfla4, Apr 23, 2013.

  1. Allyson

    Allyson *****

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    I quite agree Sean - not to mention that they make a living providing " talk therapy " as it was called in a recent article ? that one?
    Nothing against therapy or tehrapists - some are fabulous and very hard working and do a great job.
    but i do wonder about the symptom overlap - thus Wessley and his ilk are par form impartial.

    as they say ... ever ask a barber if you need a haircut !


    I think this is a valid point that bears investigation as research into brain fog and crashes increases.

    Likewise the symptoms of anxiety can be induced in us simply if we stand up for any lenghtof time or get too hot for too long. They are the same symptoms caused by adrenalin release.
     
  2. Allyson

    Allyson *****

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    that would be nice to see Eco

    here is another article from California 23rd April 2013

    http://www.imperialvalleynews.com/i...research-reveals-pathway-of-fibromyalgia.html
     
  3. Allyson

    Allyson *****

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    and another new research initiative i think?? if they still call it cfs though i don't get my hopes too high


    Chronic Fatigue Syndrome Research Foundation

    The CFS Research Foundation is proud to be a founder member of the UK CFS/ME Research Collaborative (UK CMRC) which was launched yesterday (22 April). The Collaborative will pull together scientists, researchers, funders and support groups from across the UK to greatly expand our knowledge of this complex disease and ...its treatments. The Foundation remains committed to funding bio-medical research of the highest quality and continues to actively seek ground-breaking and novel research from existing and new scientists in the field.
    Dr Esther Crawley, deputy Chair of the Collaborative and a member of the Foundation's Research Committee, said:
    "We need to join forces with charities and funders to ensure we can best address the needs of patients suffering from this often life changing condition."
    Professor Stephen Holgate, Chair of the UK CMRC and MRC Professor of Immunopharmacology at the University of Southampton, said:
    “For the first time the research community and funders in the UK have joined forces in this unique new collaboration to create a step change in the amount and quality of research into CFS/ME. By coming together in this way the application of state-of-the-art research methodology to this complex group of conditions will greatly increase the chance of identifying pathways linked to disease causation and novel therapeutic targets. The Key to success will be the engagement of scientists outside the field.”
     
  4. Valentijn

    Valentijn Activity Level: 3

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    I have a neighbor who was diagnosed with burnout a couple years ago, as a result of her falling down suddenly in her home and being unable to get up.

    Boggles the mind.
     
    Allyson likes this.
  5. Valentijn

    Valentijn Activity Level: 3

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    Something else they mentioned finding in ME patients was slower cell reproduction. Maybe this relates to muscle repair after exercise, which has basically caused a ton of micro-tears in the muscles that need to be rebuilt - with new cells?
     
    biophile, Allyson and ukxmrv like this.
  6. alex3619

    alex3619 Senior Member

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    I wonder if this is why I develop so many painful, long-lasting muscle injuries?
     
    Allyson likes this.
  7. Bob

    Bob

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    I find I have to eat quite a lot of good quality protein, or I get run-down. I don't know if that could be related, or if I just have a problem with absorption.
     
    Allyson likes this.
  8. Esther12

    Esther12 Senior Member

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    I need to eat a lot too, particularly considering how little I do and that I'm really skinny. It takes up a lot of time and money really.

    OT: Pork from Asda Bob. It's a cheap winner. We slow roast pork shoulder (£3/kg), and then have tasty protein to snack on through the week. They also have a cheap pork leg cut which it's often worth ordering. Left-overs can be used in pasta, stir-fry, sandwiches. By golly gosh that bargain has made my life better. It could be less good if you're eating alone though, as they often come in 2kg pieces.
     
  9. Jarod

    Jarod Senior Member

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    planet earth
    I bet I could find a bio-marker for that.

    bruises on elbows or knees maybe?

    Least I didn't moon everybody. :O)
     
    clive powney likes this.
  10. NPDivi

    NPDivi

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    While doing some reading on another topic, I came across the following article: Mito-conundrum: unraveling environmental effects on mitochondria. Schmidt CW; Environmental Health Perspectives, 2010 Jul; 118 (7): A292-7.

    Here are some interesting excerpts that are relevant to this thread:

    Douglas Wallace (from UC Irvine) adds that because clinicians don’t yet have tools for measuring energy flows in living organisms, many mitochondrial conditions go undiagnosed. “Research groups in the mitochondrial field are scrambling to get tools for measuring energy deficits, but they’re not available to doctors who see patients,” he says. “So from [the perspective of] the practice of medicine, if you don’t have the test, the problem seems to not exist. But it’s not true that what you don’t know won’t hurt you—these are real phenomena, and they cause real health problems.”

    Beyond genetic causes, scientists now attach growing importance to environmental factors that trigger mitochondrial problems. In some cases, illness ensues only when chemical exposures interact with genetic risk factors.

    (In regards to AZT toxicity) As mitochondrial performance drops, cells revert back to glycolysis—a more primitive, less efficient mechanism—to generate ATP. That change in metabolism is reflected by a build-up of lactic acid, a by-product of glycolysis, which can be used as a biomarker of mitochondrial failure. In fact, recent evidence shows a link between autism and a build-up of lactic acid in serum, suggesting a possible role for mitochondrial dysfunction in the etiology of this disease.
     
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  11. Marco

    Marco Old blackguard

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    Well I like to speculate and I'd assume this was more than just a shot in the dark.

    After all, unless we're an alien species we are (or should be) dealing with basic physiology here.

    I presume this 'cell in a gym' experiment is an established test for something an if so what and in what disorders.

    I would be pretty daft to design an experiment using a novel test in a condition of unknown pathophysiology like ME/CFS otherwise you have no idea what the test is telling you?

    They must have had some rationale for designing this experiment and presumably then some working hypothesis.
     
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  12. Marco

    Marco Old blackguard

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    Something along these lines had occurred to me and it ties in with earlier reports of a switch in muscle fibre type in ME/CFS patients from (if I recall correctly - from type I endurance/aerobic to type II weight bearing/glycolytic).
     
    Allyson, ahimsa and Enid like this.
  13. Allyson

    Allyson *****

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    Just wondering aloud if muscle is connective tissue - I dont think it is -

    I have read that ligaments, tendons, blood vessels and lymph and blood are but also maybe interstitial fluid is also connective tissue?

    I found this good link from WA University on connective tissue anyway and thought would post it here as it is the best link i have seen yet on the topic - and connective tisseu is ceratiinly pervasive and would not doubt play some role in muscle repair.

    http://www.lab.anhb.uwa.edu.au/mb140/CorePages/Connective/Connect.htm
     
  14. Allyson

    Allyson *****

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    yes i find a high proten diet - needs to be constantly high - makes a big difference

    that is also what Dr Myhill and others recommend of course too
     
  15. Allyson

    Allyson *****

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    And I think they are chasing up the same line of research for EDS which has so many similar symptoms.
    Alas here they perpetuate the misconception that you need to be hypermobile or have stretchy skin to have EDS.
    Intereting that until now those hae been often the only symptoms taken seriously by doctor in EDS whild the other battery of symptoms that mirror ME - fatigue, pain brain fog, GERD, IBS, joint pains etc etc have been ignored.
    Could not find a date sorry.



    Fatigue is associated with muscle weakness in Ehlers-Danlos syndrome: an explorative study.

    Voermans NC, Knoop H, Bleijenberg G, van Engelen BG.

    Source
    ...
    Department of Neurology, Donders Institute for Brain, Cognition and Behaviour, Radboud University Nijmegen Medical Centre, P.O. Box 9101, 6500 HB Nijmegen, The Netherlands. n.voermans@neuro.umcn.nl

    Abstract

    OBJECTIVES:

    Ehlers-Danlos syndrome (EDS) is a clinically and genetically heterogeneous group of inherited connective tissue disorders characterised by joint hypermobility, skin hyperextensibility and tissue fragility. It has recently been shown that muscle weakness occurs frequently in EDS, and that fatigue is a common and clinically important symptom. The aim of this study was to investigate the relationship between fatigue severity and subjective and objective measures of muscle weakness. Furthermore, the predictive value of muscle weakness for fatigue severity was determined, together with that of pain and physical activity.

    DESIGN:

    An explorative, cross-sectional, observational study.

    SETTING AND PARTICIPANTS:

    Thirty EDS patients, recruited from the Dutch patient association, were investigated at the neuromuscular outpatient department of a tertiary referral centre in The Netherlands.

    MAIN OUTCOME MEASURES:

    Muscle strength measured with manual muscle strength testing and hand-held dynamometry. Self-reported muscle weakness, pain, physical activity levels and fatigue were assessed with standardised questionnaires.

    RESULTS:

    Fatigue severity in EDS was significantly correlated with measured and self-reported muscle weakness (r=-0.408 for manual muscle strength, r=0.461 for hand-held dynamometry and r=0.603 for self-reported muscle weakness). Both muscle weakness and pain severity were significant predictors of fatigue severity in a multiple regression analysis.

    CONCLUSION:

    The results suggest a positive and direct relationship between fatigue severity and muscle weakness in EDS. Future research should focus on the relationship between fatigue, muscle weakness and objectively measured physical activity, preferably in a larger cohort of EDS patients
     
  16. Allyson

    Allyson *****

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    and the bottom par of this - aas undated - abstract points to possible extracelluler amtrix involvement which may be related.

    The Ehlers-Danlos syndrome, a disorder with many faces.
    De Paepe A, Malfait F.
    Source
    Centre for Medical Genetics, Ghent University Hospital, Ghent University, De Pintelaan 185, Ghent, Belgium. anne.depaepe@uzgent.be
    Abstract
    ... The Ehlers-Danlos syndromes (EDSs) comprise a heterogeneous group of diseases, characterized by fragility of the soft connective tissues and widespread manifestations in skin, ligaments, joints, blood vessels and internal organs. The clinical spectrum varies from mild skin and joint hyperlaxity to severe physical disability and life-threatening vascular complications. The current Villefranche classification recognizes six subtypes, most of which are linked to mutations in genes encoding fibrillar collagens or enzymes involved in post-translational modification of these proteins. Mutations in type V and type III collagen cause classic or vascular EDS respectively, while mutations involving the processing of type I collagen are involved in the kyphoscoliosis, arthrochalasis and dermatosparaxis type of EDS. Establishing the correct EDS subtype has important implications for genetic counseling and management and is supported by specific biochemical and molecular investigations. Over the last years, several new EDS variants have been characterized which call for a refinement of the Villefranche classification. Moreover, the study of these diseases has brought new insights into the molecular pathogenesis of EDS by implicating genetic defects in the biosynthesis of other extracellular matrix (ECM) molecules, such as proteoglycans and tenascin-X, or genetic defects in molecules involved in intracellular trafficking, secretion and assembly of ECM proteins.
     
  17. Allyson

    Allyson *****

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    Neuromuscular properties of the thigh muscles in patients with Ehlers-Danlos syndrome.

    Gerrits KH, Voermans NC, de Haan A, van Engelen BG.

    Source
    ...
    Research Institute MOVE, Faculty of Human Movement Sciences, VU University Amsterdam, van der Boechorststraat 9, 1081 BT Amsterdam, The Netherlands. h.l.gerrits@vu.nl

    Abstract

    INTRODUCTION:

    Ehlers-Danlos syndrome (EDS), a connective tissue disorder, may lead to impaired contractile function of lower limb muscles.

    METHODS:

    To test this hypothesis and to understand the possible mechanisms involved, isometric function of the thigh muscles was investigated at different joint angles (30°, 60°, and 90° of knee flexion) in 7 tenascin-X (TNX)-deficient EDS patients.

    RESULTS:

    There was reduced maximal voluntary torque of the knee extensors (but not knee flexors) across all joint angles in the patients. Time to reach maximal rate of torque development was delayed, and voluntary activation capacity was reduced in patients compared with controls, particularly at 30°.

    CONCLUSIONS:

    EDS is associated with muscle weakness, most likely due to increased compliance of the series-elastic component of muscle tissue and failure of maximal voluntary muscle activation. Further research is required to understand the influence of reduced voluntary activation on the severe fatigue reported by EDS patients.
     
  18. biophile

    biophile Places I'd rather be.

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    Good point. Spare a thought for all those people during the early part of the 20th century who were goaded into dubious psychiatric diagnoses when the "neurasthenia" diagnosis fell out of use. Some would have been institutionalized and subject to barbaric therapies by people with no clue. Scary stuff. Oh wait, that still happens in the UK.
     
  19. alex3619

    alex3619 Senior Member

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    Actually the diagnosis of neurasthenia never ended. In the UK I think it stopped in the mid 40s, and in China its still used. However its prevalence dropped around WW1, as most psychs started diagnosing different disorders instead of neurasthenia.
     
  20. SilverbladeTE

    SilverbladeTE Senior Member

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    My mum got her spine severely damaged in an accident, then they dropped her off the X Ray table onto old fashioned rails (like railway tracks they moved the huge x ray machines on..and no one "saw it" you know like 4 folk there and they all "didn't see it", gutless scumbags. Mum got her spine snapped protecting a patient and those swine hadn't the spine of a jellyfish)
    and they used an x ray dye that they KNEW caused damage to the spinal cord
    so she ended up in agony, and a psychiatrist said she had "neurasthenia" (that was in late 60s).
    no it was NOT neurasthenia, they changed it iirc first it was diagnosed as anyklozing spondilytis (spelling?) and then they decided it was arachnoiditis
    she had scaring building up on her spinal cord nipping the nerves causing incredible pain, it was not all in her head
    one of many reasons I regard a lot of the medical profession as arrogant, inhuman, callous, useless bastards.
     

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