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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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UK: House of Lords to debate PACE study, Weds 6 Feb 2013

Discussion in 'General ME/CFS News' started by Sasha, Jan 31, 2013.

  1. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Patients are not going to be driving the service acquisition process. From the patient's perspective little will change - GPs will be the first contact and referal will be to the appropriate available specialist service if that is required. GPs will have a more pivotal role in commissioning of services, but patients will still be matched o services, rather than the other way around. The commissioning groups will still be required to follow NICE guidelies and the published clinical pathways - neither bouncy castles or letters to the DWP are likely to be much in evidence !

    IVI
     
  2. In Vitro Infidelium

    In Vitro Infidelium Guest

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    The point is not whether 'I know' them - the point is whether they mean anything. The 25% Group isn't a source of research or stringent analysis and frankly in the light of this http://www.edmesh.org.uk/2013/02/fall-of-the-cross-party-group-on-me/ I can only see the 25% Group as pursuing a dubious agenda and not in any way a trustworthy source of objective data.

    I didn't suggest that "there are no significant numbers of severely affected" - the issue is: what does the term severely affected mean ? The whole notion of dividing the patient popualtion up into 'really ill' and 'maybe a bit ill' seems to me to be wholly flawed. As far as I can tell, pretty much anyone with M.E/CFS will spend some amount of time (months/years) being majorly ill, some will improve and some will dip in and out of 'improvement' - but in that context I just do not see the sense of talking about anything other than 100% of patients. We may in time be able to identify sub groups, either by aetiology or levels of disablement (though even there it becomes dubious - for example is bed bound by weakness worse than being in constant pain but able walk a bit ?), but for now arbitrary divisions help no one, other than perhaps those with a separatist agenda.

    IVI
     
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  3. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Why would EI include PEM ? To even argue for an equivalence/relationship to me seems perverse. Exercise Intolerance is a well established phenomena in heart disease, COPD and some Cancers - one of the most prominently recommended treatments for 'exercise intolerance' is 'exercise therapy' (you know like GET !). This is precisely where Sharpe, Wessely and White came in. If PEM really is just a sophistication or particularisation of EI - then it raise the very ral argument that PEM should be susceptible to improvement with GET. Note - this ain't a direction I think we shuld be going - as far as I'm concerned PEM offers a very different direction of exploration.

    IVI
     
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  4. Valentijn

    Valentijn Activity Level: 3

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    Perhaps there is some medical (or psychological) definition you know about that I don't, but exercise intolerance is pretty much exactly what the name implies, according to wikipedia. There's also a huge list of disorders involving exercise intolerance where exercise in contraindicated. Even "severe chronic fatigue syndrome" somehow made it onto the list :thumbsup:

    If anything, I think the BPS school stays away from referring to PEM as "exercise intolerance", simply because it is clearer what it is, and it's known that exercise causes physical harm in many cases. "Malaise" sounds so much more fitting for something they're trying to paint as a psychological disorder.
     
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  5. In Vitro Infidelium

    In Vitro Infidelium Guest

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    A wikipedia article with just a single reference ! And no reference at all for CFS !!! Here's a definiton of EI that clearly removes it from any link with PEM as it demands contemporary linkage:

    Exercise intolerance results when a subject is unable to sustain a required work rate sufficiently long for the successful completion of the task.
    http://www.carefusion.com.au/pdf/Respiratory/HFOV/ra_ch8.pdf
    So PEM is part of the (fictional) BPS school conspiracy ? Malaise is perfectly good term for a generalised experience of mutiple symptoms http://www.nlm.nih.gov/medlineplus/ency/article/003089.htm but if a better term is needed then lets see that generated. But PEM or whatver altrtive is clearly differentiable from exercise intolerance merely on the basis of lack of contempraneity with the provoking activity. I don't understand why anyone would want to argue this point but I guess we will see development of EI = PEM as a position of faith to be added to the M.E/CFS apocrypha.

    IVI
     
    alex3619 likes this.
  6. Firestormm

    Firestormm Guest

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    Of course! Question is what to demand? I am all for more research and for biomarkers and better understanding of what is happening/has happened to me. But what can be offered to people now? Best we can try to ensure is a correct diagnosis and that those diagnosing are aware of possible alternate conditions in order that more specific treatments can be prescribed and people are not unnecessarily lumped together with you and I.

    I have said on numerous occasions that I feel one of the glaring anomalies in the NICE Guideline is the lack of prominence given to 'clinical management' i.e. consideration afforded to the prescribing of drugs to help manage symptoms. Early in my 'career' with ME even the most expensive doctors didn't have a clue. It might seem a small thing but the ME Association's Clinical Issues booklet is the only one I am aware of that tries to bring these options to a doctor's (and patient's) attention. It isn't enough to presume any doctor will spend the time or allocate the time to best consider what else might help a person. Sometimes they need to be reminded - or educated.

    There is nothing worse than for a person to be diagnosed with ME only to discover later that there is something else that can better account for their symptoms and degree of disability. Especially when that something is treatable. So reinforcing NICE and helping to educate doctors (at all levels), keeping the issues pertaining to ME to the fore (jostling with all the other conditions that take up a doctor's time), hosting lectures, liaising with the NHS and GP Commissioners, attending meetings and being a member of the Neurological Alliance etc. all of this might seem small but believe me it takes a lot out of us. Even raising funds in the street when able helps keep ME in people's consciousness.

    Nobody should be belittling anyone else's efforts. No matter how big or small. Or if they as an individual feel it isn't right for them. Even being a simple member of e.g. the MEA or an organisation of your choice can help. When I was at my worst that was the very least I felt able to do.
     
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  7. Valentijn

    Valentijn Activity Level: 3

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    How is it an anomaly? The NICE guidelines for ME/CFS are based on recommendations made by "researchers" who are adamant that ME is a psychological problem. But their own research shows we don't respond to antidepressants, so they presume there can't be any useful pharmacological (or vitamin/supplement) treatment for ME patients. It's perfectly consistent in an extremely stupid and wrong way.
     
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  8. maryb

    maryb iherb code TAK122

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    F - you said ' I have said on numerous occasions that I feel one of the glaring anomalies in the NICE Guideline is the lack of prominence given to 'clinical management' i.e. consideration afforded to the prescribing of drugs to help manage symptoms'
    but there aren't any drugs to help manage my symptoms, nor do I want any - I want NICE to acknowledge that -
    we need doctors to be looking into the cause of ME. Be interestd in what is causing these symptoms in this person who used to be fit and healthy.
    Constant searching is the only way this will be successful, and I believe we would see a pattern emerge, of course it costs money but what about the benefits being paid to thousands of sick people , it just doesn't add up to me.
    GP's not even allowed to do viral testing is just great isn't it?
    If blood tests like those done by ME docs in the USA were authorised I'm sure we would see a pattern like they have found and maybe get a bit nearer solving the mystery of this illness.
    My blood tests done by my GP showed abnormally high levels of lymphocytes, she told me everything was normal, so thats normal for ME patients or whiners as they probably refer to us.

    ps I would never belittle anyone supporting ME orgs or groups unless it was AfME:(
     
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  9. Roy S

    Roy S former DC ME/CFS lobbyist

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    umm... young lady... language?
     
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  10. Research 1st

    Research 1st

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    PACE is Dr Peter White (St Barts hospital). Barts is where Tony Pinching worked with his CFS 'experts' (Occupational Therapy, Physical Therapy, Clinical Psychologist).

    With PACE you could be mistaken the situation in the UK of no effective treatment is to do with psychiatrists alone, but this is not so. Non mental health teams adopt the psychiatric view that claims CFS is maintained by faulty illness beliefs and activity avoidance due to these beliefs, that worsen fatigue and that the fatigue has no organic cause and is caused by poor sleep and deconditioning. (Comprehensively proven false with CFS biomedical research from outside of the UK).

    Even if PACE had never been funded, NHS immunologist and member of the UK working party report on CFS/ME in the UK says the following about CFS sufferers treatment in Prescribers' journal, 2000. Proving this.

    These outdated views of UK 'CFS/ME experts' :rolleyes: are a world away from Dr Chia's who undertakes tissue biopsies on his CFS patients and prescribes antiviral drugs, but the American system of CFS treatment is vastly superior after all and thankfully evolved away from the UK's primitive beliefs, as long as you have private health cover that is....

    The message above is that people with mental health problems can improve from CFS from psychiatric intervention that Dr Pinching (immunologist) recommends. So we can see that PACE is not just to blame as a recent phenomena of CFS confusion, its the actual system in the UK is entirely a shambles because it isn't based on scientific evidence, which is meant to underpin medicine!

    It would be easy to presume that the UK PACE cohort contains a solely psychiatric group of patients but the PACE trial had very poor results if the patients were representative of chronic mental illness, as hardly any recovered, by what we define in normal society as recovered that is. The PACE trial participants couldn't be mostly mentally ill after all. Most of them must have had CFS instead.

    This is useful to consider because it demonstrates how organic illness (including ME) can easily go undetected, and misdiagnosed as psychological or 'mind body'. (No blood test for 'mind body' exists, no scan, no nothing). All organic diseases are worsened by stress (mind), but not treated as a mind problem, but a body problem. Diseases require medical drugs for the disease, such as insulin not CBT as an alternative to insulin. (CBT is currently the alternative to B cell depletion). :eek:

    PACE trial participants were presumed to be (mind), but weren't. The Wessely school theory failed, and failed utterly. CFS indeed contains people with serious health problems that are not 'mind'. As we all knew along.

    PACE participants failed to recover with the treatments (the Wessely school (psych background) and Dr Pinching (immunological background) and others all say work for CFS), because the treatments basically don't work, except marginally. It might also explain why actimeters were removed before the trial ended,arguably because the researchers realized that their mind body theories on CFS were wrong, and they needed to affect the outcome of the paper. Which they did. (So they had to change the meaning of the word 'recovered'). The freedom of information act request was denied for PACE again in the UK. (It was also denied in the past over MRC research funding being turned down). MRC primarily fund psychiatric research into CFS.

    Denial over organic causation of ME (inside CFS) protects evidence of the causes of ME becoming public. No one from PACE is prepared to tell the general public their definition of recovered in the paper's data for CFS because we know what the answer is. This would end the CFS/ME game, biomedical research would take over psychological. ME would be essentially discovered inside CFS, probably within ten years of robust biomedical research into CFS.

    So there is an irony that the PACE trial was the weakest possible cohort of CFS possible, but PACE still failed to demonstrate the effectiveness of CBT and activity management. In a twist of fate, this is a a rather good outcome if you have CFS because it shows that CFS is not a psychiatric health problem, despite the claims of effectiveness for interventions from people who treat it as such but never say it is.

    PACE has large influence in the UK and was reported oversees, so the authors of the PACE trial need to be careful what they are claiming because other countries may adopt it, if it is sold to them (psych rehabilitation industry and insurance companies). To avoid other countries in the future seeking compensation for damages towards the UK (if the CFS sufferer has ME or another disease diagnosed as CFS) are physicians screening to make sure people with these disorders they call CFS aren't harmed by clinicians with faulty illness beliefs, by first, ordering specialist diagnostic tests on people they believe have CFS before a PACE style therapy begins? I think not.

    What might happen, if a person isn't screened and then sufferers harm? Injury or deaths are possible.What might happen if a patients isn't screened by the doctor, because the doctor read the sensationalist reporting of the PACE trial and then didn't refer their patient on for specialist tests? Cancer, autoimmune disease, heart failure could be missed.

    The UK House of Lords debate should have covered these matters but as you can see if you dig deeper the 'speakers' for ME/CFS were a psychiatrist and those linked to other areas of mental health, the Welcome Group (ex vaccine manufacturer) and women's reproductive health. Only one wasn't! The house or Lords debate, was therefore not a debate on ME/CFS, because it was massively one sided with people who could have represented ME patients and organic CFS,not speaking. :( This should be expected in the UK, however, and is part of the system at work.

    If a more balanced debate has been permitted, what could have been discussed is raising cautions on behalves of patients in the UK (who are affected by PACE trial data) who likely haven't got the medical knowledge to understand there is no scientific evidence that CBT is effective for CFS, and that their own personal CFS might be caused by other organic factors that could be treatable if diagnosed.

    Claims of PACE data being used to make claims of a safe treatment option for CFS increases likelihood to treat CFS as a mental illness, which paradoxically Pace proves is not the case!

    The Americans could run the UK system and get it in good working order, but they don't have a 'House of Lords' and for good reason. Science needs to be debated by scientists, not 'Lords' who don't even have to be a scientist to have influence on the UK general public, and in this case the influence was entirely unhelpful, unless you have chronic fatigue of mental health origin.
     
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  11. maryb

    maryb iherb code TAK122

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    Thanks for the laugh...
     
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  12. Kina

    Kina Moderation Team Lead

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    Please note, this thread was started in order to discuss the UK: House of Lords Pace study debate. It has already been closed once due to personal attacks. We have just removed and edited numerous posts as they were rule breaches and totally off-topic.

    The only way that this thread is going to remain open is if members refrain from posting personal attacks and related off-topic material. Members are free to disagree with another member's point of view and discuss why they disagree. You are not free to attack any member on a personal level as this is a rule breach.

    Please note:

    Thank you.
     
  13. Roy S

    Roy S former DC ME/CFS lobbyist

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    I didn't know that. Is that part of the reason British patients have gotten screwed?
     
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  14. maryb

    maryb iherb code TAK122

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    Roy stop these funnies:rolleyes:

    Winston is a big nob/gob in the medical establishment in the UK. Of no use to us at all. He has never expressed an interesting original thought or opinion that I've ever heard. Party line party line party line zzzzzzzzzzzzzzz
     
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  15. Roy S

    Roy S former DC ME/CFS lobbyist

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    Pardon me ma'am. It's hard to know what can be said here. I was going to change my signature to moderation in all things, including moderation.
     
    It looks to me like the Wessely School may have finally gone too far since the PACE trial ended. Saint Simon the courageous knight persecuted and all that. It appears that people are working together more. Although I am no expert in the system in the UK it is heartening to see things like this statement today which ends:
     
    "There is widespread concern in patient community about the way in which these research results relating to CBT and GET are being distorted in the media and adopted by organisations such as the National Institute for Clinical Excellence (NICE) as a ‘one size fits all’ approach to management. To conclude that they are safe and effective for everyone with mild or moderate ME/CFS, as NICE currently does, is simply wrong."
    Dr Charles Shepherd
    Hon Medical Adviser, ME Association
    http://www.meassociation.org.uk/?p=14460
     
     
  16. Mark

    Mark Acting CEO

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    If you are struggling, try staying on topic, and read the forum rules if you want to remain a member of these forums. Pay particular attention to Rule 9, which explains what should be fairly obvious: disrespecting the moderators and disputing moderation within discussion threads does not go down well. If your post above is deleted, that would be why. Also read Rule 1.

    You've all had plenty of warnings on this, and there won't be any more. There are other forums available for people who don't want to abide by the rules here. Please return to the topic of this thread.
     
  17. Dolphin

    Dolphin Senior Member

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    For anyone who missed it:
    At nearly 22,000 words (pdf is 35 pages), it's a long, long piece. But contains a lot of interesting information on the PACE Trial and ME/CFS politics, if you haven't read similar documents by Margaret Williams.

    There's a thread on this at: http://forums.phoenixrising.me/inde...ds-grand-committee-on-6th-february-2013.22376

     
  18. Dolphin

    Dolphin Senior Member

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    Peter White:
    from:
    http://www.informationtribunal.gov.uk/DBFiles/Decision/i1069/20130822 Decision EA20130019.pdf

    Not a surprise, really.
     
  19. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    UK politics is a sick, incestous web of nepotism, cronyism and perversion so hey, White etc are "Teflon" until the tabloid media crucifies them.
    As I often say about politicians and those craving power: "They'd lick the Devil's arsehole if they thought they'd find a shilling up there!" ;)
     
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  20. Legendrew

    Legendrew Content team

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    The thing that always upsets me with these debates is that the replies are often made by intelligent people who are simply uninformed and too trusting of the general consensus towards things such as the PACE trial. Certainly I agree that the death threats and vilification some patients give out is simply wrong and does nothing to help the cause whatsoever by simply reinforcing the voices labeling ME as a psychological problem - I can understand the desperation and anger that causes these comments and attacks (I myself am often angered by the neglect) but these emotions are not helpful when directed in such a way.
    I have to commend the Countess of Marr for all her hard work and I hope that the root of ME/CFS is found soon - if only for her to get the recognition she deserves!
     
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