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Dr Bateman's views of CFS as SEID do not reflect severe ME pathology.

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Research 1st, Feb 12, 2015.

  1. Research 1st

    Research 1st Severe ME, POTS & MCAS.

    Dr Bateman's views of CFS as SEID do not reflect severe ME pathology.

    Before I start, I would like to make clear this is not a moan, but a valid concern I have with an article I just read on SolveCFS. Any doctor has a right to an opinion, but to misrepresent (I believe not intentionally) the severe disease form of ME in a happy positive manner, is not acceptable in my view and many others with severe ME will agree.

    Sadly, severe ME would be encapsulated within SEID, if ME is not permitted to continue outside). Hence, my critique. This is not Dr Bateman's fault, it's the IOM's responsibility for stating the report is redefining ME CFS. (So ME is now automatically included by default in all references to SEID from here on). Perhaps the IOM will change their approach, and ME is not associated to SEID after all. Maybe this will occur in the future, if new research data is published, such as a specific virus or bacteria being discovered that would cause neuro inflammation and muscle pain.

    Dr Bateman's comments since the publication of the IOM's SEID are understandably upbeat. Her and her colleagues have done their best to pull CFS from the well, however, CFS never was about ME due to the weak diagnostic criteria the CDC chose. CFS was about a collection of fatigue disorders, and ME patients had no 'home' to go to, except CFS.

    Dr Bateman's positive statements are perfectly suited to organic CFS, in my view. I find them understandable for someone who see's patients with organic fatigue syndromes in a clinic, but they simply do NOT reflect the lived experiences of people housebound and bedridden with ME, sometimes for decades. This is my view, and those of others with long term housebound severe ME who do everything Dr Bateman suggests, and still remain crippled. (My core issue).

    No one can argue Dr Bateman isn't trying. I applaud her for trying to help her patients, however her patients are not those with with severe ME, but those well enough (irrespective of PEM) to get to her 'fatigue clinic' and to physician's clinics like hers. That is great for those patients, and I wish them all the best in their recovery from CFS and SEID. Unfortunately severe ME remains totally non treatable. Science suggests it may be an infection associated autoimmune disease, this would give overwhelming symptoms at rest in the severe form, not just exertion based. SEID for severe ME, would thus not be an accurate, term as the name would focus on exertion not immune disorder or inflammation. (Hence many people prefer ME to SEID, who have severe ME).

    Before I type my concerns I will end on saying once more I welcome organic CFS patients entering SEID, it's a good day for mild and moderate affected patients (existing diagnosed), of which I used to be before I relapsed permanently (like many other patients) by doing graded activity and ignoring my body by using CBT and other mind-body therapies.

    For severe ME patients, it would appear until biomarkers can separate sub-sets of differing etiology it would be best people with ME stick to the ME-ICC (already published) and to scientific research that should provide evidence of neuroinflammation, and thus an Encephaloymelitis state, something the IOM feels is too specific for the newly proposed SEID condition.

    Some people tell us, the 'ME' is impossible to ever detect, yet we saw in 2014 the Stanford CFS research showed us preliminary evidence of an 'ME' state (in terms of neuroinflammation) in cutting edge brain scans. Additionally, deceased patients with ME's spinal cords have shown inflammation, demonstrating that 'ME' does exist, in people diagnosed with it!

    Much more importantly in terms of debating if ME is a dead duck name, one should not forget:

    Encephalomyeltis is an known damage effect of untreated tick born infection, such as Borrelia (Neuroborreolosis) and Bartonella (Bartenolosis). BOTH infections are increasingly found in patients with ME, such as in Europe.

    ME then, is simply Muscle related (Myalgic) + Encephalomyelitis. It's not too 'out there' at all.

    What we do know, is that due to brain Inflammation being removed from SEID and the trademark muscle pain, that:

    ME is not CFS, as inflammation as a core sign is excluded.
    ME is no SEID. Same once more.

    I will start the ball rolling, with some quotes that show the obvious differences between CFS (SEID) and ME and that treating SEID (if ME is to be said to be contained within) is not possible, and thus the suggestions below do not reflect ME pathology.

    Source of quotes below:
    Pearls of Wisdom from an ME/CFS Physician, part 1

    ME patients do not have chronic fatigue debilitating them as their core complaint.
    They have central nervous system dysfunction, cardiac issues, inflammation, and infections.
    CFS, in contrast, does have Chronic Fatigue as the main construct. The 'signs' of ME aren't necessary. Like many patients I did not begin my disease with 'fatigue' at all, moreover it was endocrine and cardiac problems, and then OI, the immune problems and then relentless infection (permanent cold virus type symptoms) came years later. Fatigue was the last of my concerns.

    A curious statement. There is no evidence at all that being able to find the 'joy of living' is achievable with ME, as there is no proven treatment options. Offering a patient false hope is not advisable where there is no science behind the claim, where such as huge heterogeneity exists using any ME CFS or SEID criteria, this becomes even more pressing.

    Diseases of organic nature do control you, without treatment. The mind does not overcome the disease, be it ME or Lupus or Schizophrenia. ME can render people paralyzed and incontinent.

    Should we be telling these patients 'no disease can take away the freedom to choose'?

    No. This is fundamentally wrong in my opinion, because it is only suitable to those less affected. Why ignore the people most severely affected by not including them?

    No evidence exists to support this statement.

    The severely affected remain housebound and bed-bound.

    The deceased, still die of their ME.

    We still often develop autonomic dysfunction and bone damage. Cheerleading in our support won't prevent this. POTS has no proven treatment that works. I have POTS badly. My mind cannot overcome it, or reduce it. POTS has some new evidence it may be autoimmune.
    It is estimated by Prof Julia Newton, many people with CFS, have POTS. In it's severe form, POTS is devastating, never mind having ME or CFS on top.

    Where is the evidence severe ME CFS (SEID) patients are in an emotional slump as a part of the disease experience? What about the patients who aren't?

    They too remain bed bound and housebound.

    Patients often don't have family and friends and can't afford to pay for a counselor. Patients have no income and can't even go to a hospital to pay for a test, to confirm they have cancer.

    ME destroys lives, relationships, and renders people often friendless because the
    medical profession has ignored them, left them unemployed, unable to finish school or college
    and no one knows they exist. Without a test separating out subsets, this will never change.
    Excluding people with ME (via CFS and now SEID via the IOM, that shuns brain inflammation) continues this process.

    A support system, is thus impossible to achieve for long term severely neglected.

    This comment, speaks for itself.

    Some patients may well have mental health problems in any disease (physical or mental), however many don't and are are kept sicker by unresolved Infections, autoimmune type symptoms & severe grade autonomic dysfunction. All of these remain non treatable by medical science because all three causes remain novel at the moment, and no treatments exist. Indeed those said to be making their condition worse by alleged faulty illness beliefs and maladaptive coping mechanisms in the British PACE study (using F48.0 which the IOM rejects as too lax), failed to respond with mind therapies. How then, the mind vs body concept is relevant to CFS or SEID, I don't know. It looks again like non evidence based, but is based on personal experience treating CFS patients in clinics. These cohorts aren't the severely affected in their homes, as they can't get to the clinic to be seen.

    This is not accurate.

    Only subsets of ME and CFS follow this pattern, as with MS. Not everyone has relapsing remitting CFS.

    Subsets of ME wax and wane
    Subsets of ME include permanent severe state.
    Subsets of ME include fatal outcome, appearing to be young people in their twenties and thirties.

    Why is no one in the IOM or any IOM panel member admitting the fatal subsets of ME, as CFS in the published report? This confuses me.

    There is no evidence base for this regarding the dysfunctions found in ME CFS in research using a measurable test. Can any physician prove ME patients alter their pathological disease state by using their mind, when we don't even have subset yet, never mind are researching the severely affected.

    This belief that emotions make physical better, appears to be something more akin to NLP, LP and CBT that hopes to shift 'beliefs' making claims of reduction in physical symptoms. Something perhaps more akin for Dr Unger and the CDC who publicly stated that the mind and body in CFS are linked, but without providing evidence.

    No science evidence has ever been published, using the scientific method.

    Some patients with poor emotional response to chronic illness, will naturally be able to 'do more' with the right mindset. That is common sense, however, no evidence exists that people with ME need to increase their 'emotional resilience' and it is offensive to people with often extreme in-built natural emotional resilience to suggest it to them after they keep going for so long, for so many years without any emotional upset or secondary mental illness which should be recognized and discussed.

    This I have a huge issue with.

    Severe ME patients will tell you from decades of suffering this is an not a realistic achievable aim.

    At rest:

    Burning muscles, nerve pain and 'flu like' aching.
    Episodic twitching of muscles (including in face) which affects sleep.
    Severe ME patients may have shortness of breath, repeat allergies and bronchospasm episodes.
    Loss of balance (vertigo) permanent, and episodic with infections, which become chronic over time.
    Associated to vertigo, ME patients can have nystagmus, where your eyes literally wobble and jump which is horrible to endure.

    Sufferers may need to sit upright with a mattress raiser due to balance loss and shortness of breath.
    This prevents sleep and suffers cant' often even turn their head to get comfortable.
    Confusing (waking up not knowing where you are).
    Night terrors.
    Hot flashes/flushes.
    Acid Reflux, coughing up phlegm, choking on phlegm that comes from laying down.
    Anxiety, and episodic panic attacks, or chronic. (Non treatable due to medication refusal by physician or drug intolerance, diaphragm weakness (not safe to give sedatives).

    How do you sleep like that by taking 'sleep meds' or 'going to bed at a constant time'?

    Severe ME patients (due to disability or social health care systems denial) refuse to allow for a 'Sleep Study' to detect sleep disorders. Patients will thus frequently wake up during the night, and have unrefreshing sleep because they may de-saturate (O2) and wake up multiple times, or wake up gasping.

    Severe Dysautonomia will also cause this, it cannot be 'fixed'. It is part of having a CNS disorder.
    We as patients, know this, because we experience it every day of our lives. We even get short of breath eating food, or have to eat laying down or on the floor. Nothing stops this, it is CNS dysfunction, even we are taking beta blockers, Midodrine, Gabapentin, support stockings and every supplement known to man.

    Blood sugar control is deranged in ME for unexplained reasons. Night time hypo's and reactive hypo's also cause patients sleep to be ruined. With no cause, this cannot be fixed. Sleep thus remains, ruined.

    Severe ME patients are plagued by stiff neck, and arthritis in neck and spine. This interferes with sleep.

    Severe ME patients are plagued by excessive night time urination (Polyuria) as part of having Dysauonomia and sometimes, Diabetes Insipidus that goes untreated, because the patient cannot get to hospital.

    Severe ME patients have breathing muscles than can be so weak, patients struggle to catch
    a full breath. This can also be caused by simply talking.

    ME patients often cannot tolerate many medications including antidepressants which the are well known to react adversely too.

    Try and 'sleep' with the above problems that affect PWME, or worse still try and then drug yourself and breathe then when extremely weak physically with so many physical problems. (Potentially lethal).

    Additionally tachycardia, chest pain, repeat infection also prevents sleep.

    Severe unrelenting pain, also prevents sleep. Pain that can't be treated due to medication sensitivity.


    People can take their SEID's and do what they see fit with it.

    Personally, I exceed the criteria of SEID, as I have ME so can't be diagnosed with it, as the cause is known (Severe autonomic dysfunction). However, I also have ME. Me and others can't be placed inside the SEID though, we are too ill. Thus we need ME diagnosis and criteria, ME-ICC.

    NB: ME/CFS CFS/ME never existed so the IOM cannot elect itself to 'redefine' ME/CFS
    or CFS/ME, by saying ME doesn't exist so we'll put ME/CFS and CFS/ME inside SEID.

    The IOM know this, and SEID is CFS with a new name irrespective of what non ME experts on the IOM panel say (their choice to remove ME experts) and what fatigue clinic owners say. (ME is not a fatigue disorder, but a neuroinflammatory immune disease).

    It's very hard for the severely affected to defend their lived disease experiences that differ from the patients who attend fatigue clinics. ME patients with ME, go un-noticed in the community, in clinics and online.

    Despite everything, many remain severely affected for a reason and that is for science to demonstrate in the future why, not for the onus of responsibility for recovery or improvement to be placed on us, as if we are in control and have a choice of our own medical destiny.

    That, is simply not on.

    The disease, is in control, not us, as science publications demonstrate as a diagnosis of severe grade dysautonomia, or inflammatory asthma, or hypogonadism, or endometreosis or whatever horrible secondary effects of ME one gets, these long term effects all add up to create a most ghastly physical existence that we have to endure, and do, outside of the concept of CFS, ME and SEID.

    This biomedical evidence for ME is only shown, when it's related by ME experts, the ME experts the IOM panel rejected to help formulate the name name for ME CFS.

    People like Dr Enlander, Dr Cheney, Dr De Meirleir, etc etc.

    The IOM stubbornly selecting non ME experts and fatigue clinic specialists to define a neuroinflammatory disease, was hardly going to be the optimal choice for ME patients, and now we see why.

    Severe ME (affecting at least 1 in 4 people with the condition ME) is not represented by the IOM, or indeed any Government body, adequately and can't be if the CORE FINDING (Inflammation and immune dysfunction and immune suppression (infection) is not a requirement for having ME, but an 'option'.
    Last edited: Feb 12, 2015
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  2. Snowdrop

    Snowdrop Rebel without a biscuit

    Thank you for some very clear thoughts regarding SEID. You hit the nail on the head from where I'm laying about.

    A rather small point regarding the relapse and remit comment: I had both. In the early stages I experienced R&R. Later as it became severe (after years of ignoring that I was ill) it became simply worse with no reprieve.

    And as for sleep hygiene: It just goes to show that the people making these lovely helpful comments live in a bubble of good fortune and wellness. A rather personal comment here: I would love to get a decent nights sleep using all the tools suggested and available to me. Since moving to our new home last November we have been kept awake by the downstairs tenants to the house. They must be on amphetamines as their parties go through one night and continue all day and into the next. They sometimes sound like they're bouncing off the walls. And they've done this many times so far.

    Perhaps Ms Bateman won't mind me renting a room in her home so I can get that much needed sleep hygiene she promotes.

    I see it as a major problem when well meaning people presume our lives to be very much like their own but for a few health challenges that we can overcome if we apply ourselves to doing X. It also suggests that we be 'better' than any ordinary well person in that we are NEVER allowed to drop the ball and stop trying for even a moment or be seen as wallowing in our illness as opposed to normal people opting out of something once in a while where they don't have to beat themselves up for not giving 100%, 100% of the time.
  3. A.B.

    A.B. Senior Member

    Fortunately the IOM report is free of the wishful thinking Dr Bateman displays. I wonder if you have read the report? I still haven't read it all but don't remember seeing any wishful thinking.
    Cheshire, mango, beaker and 1 other person like this.
  4. Research 1st

    Research 1st Severe ME, POTS & MCAS.

    Exactly Snowdrop.

    Individual physicians experiences of 'treating' CFS sufferers are accurate and honest.

    Dr Batemans' comments are honest, but don't accurately reflect people who can't even visit a dentist (so their teeth rot and fall out), so their gums become infected (need antibiotics), but can't tolerate the drugs and end up in Hospital dangerously ill.

    These are people with appalling levels of social care that will never change, especially if Dr Bateman says things like:

    ''Remember that much of what is known about ME/CFS physiology is centered in the brain, and the brain responds strongly to the mind''.

    ER (A&E) emergencies are not uncommon experiences with having severe ME related to the heart and breathing. Naturally, those less affected, won't be experiencing this, if they don't get worse by CBT and GE or just the disease process itself taking a natural progressively worse course.

    It appears that progressive ME, is not being acknowledge by Dr Bateman and the IOM? I could be wrong, but I can't find any IOM references to deaths from ME CFS, despite so many people now dying there are even memorial pages online and on Facebook.

    I've known of ME patients who have dangerous reactions to iron infusions (anaphylaxis) and other serious dangers that become part of their lives (including cancer) but these real effects of 'ME' aren't mentioned in the IOM because the severely affected aren't included, because to they most reflect the likely hood of a novel bacteria/viral agent leading to an ME state and that is not wanted by the IOM for political reasons.

    It would be most sensible to call CFS, SEID and let ME be ME.

    However, the harm is done when the IOM say they redefine ME CFS, as SEID then don't allow the core symptoms and signs of ME to be required as part of the diagnosis of SEID, thus creating a CFS V2.0, just with an option ability to mention OI and PEM required.

    For those who think PEM inclusion in SEID (former CDC CFS) is great, it makes no difference in the physician's office as it's a subjective report from patient to physician. Dr's don't have anything to go on to know what to do next. Not a single test, e.g. a TILT test is still not mandatory for SEID (It should be were it's safe to use it) to confirm the patients autonomic problems are not due to stress or sleep dysfunction, but due to POTS. etc.

    Many may be happy in the states about SEID after such a media deluge of 'you are genuinely ill', but we knew we were genuinely ill from day one. However, I think outside the USA little will change. Doctors can legitimately remain skeptical and will remain mind vs body focused, especially if encouraged by CFS experts to be like this.

    CFS/ME is a British concept.
    CFS/ME (created by the Dept of health in the UK) has PEM required. Thus SEID is arguably just a re-hash of this.
    For example, PEM based CFS (CFS/ME) has existed for years, but CFS/ME remains in the hands of psychiatrists and without a pathogen proven, always will do.

    Severe ME sufferers must have an appropriate place to be housed, and it's not a mental health ward, being told their PEM is 'real', but due to over doing things, poor sleep and de motivated attitude. SEID still allows for this still as no screening tests are used. Anyone can easily 'fake' SEID and get a diagnosis, or indeed be misdiagnosed. As the could with CFS and CFS ME and ME. Psychological researchers can still use this to their advantage, even if F48.0 is shunned. A hypochondriac will tell you they feel malaise, they will agree to all of the diagnostic criteria for SEID, as they did for CFS and CFS/ME. Screening tests, would have excluded these people.

    Many CFS and ME patients are told their alleged functional somatic symptoms are 'real', real to them (in their mind) and real due to de-conditioning by being inactive or bed bound. How do patients now prevent this? They have no evidence in which to defends themselves with against abusive doctors and therapists, because still, still, no biomedical tests or signs are needed for SEID.

    Thus ME cannot be SEID as we have demonstrated signs of autonomic dysfunction, immune activation, oxidative stress etc, when given the tests. Tests than in 2015, are still not recommended by any Govt body.

    Take home message:

    Gov't agencies continuing to contain severe ME sufferers inside CFS, CFS/ME or now an SEID(using no tests or test based signs of illness) is a high risk approach to disease censorship, because the patient cannot access medical services or utilize the therapies that help those less severely affected, due to the pathogenic nature of their disabilities. This has drastic negative effects on the patient, irrespective of the negative or positive mindset that only exist, in the minds of others.

    That is what screening and monitoring tests are for, but remain totally absent from CFS/ME (UK) and SEID (USA) based diagnostic criteria, and that is not to be celebrated but instead, exposed.

    There is no excuse to do this to the most vulnerable and sometimes, gravely sick patients who don't survive their disease process because a 'catch all' approach was dreamed up, over and over again.

    Severe ME patients need to be housed outside these heterogeneous, clinical diagnosis theories, called 'diseases', using appropriate tests based on ME and CFS biomedical abnormalities that are commonly found, such as using a TILT test to screen for POTS, common in ME.
    jeff_w and Wildcat like this.
  5. Research 1st

    Research 1st Severe ME, POTS & MCAS.

    Hi. Yes, I have read the core messages of the SEID and have the PDF's to flick through. The diagnostic criteria are just weak CCC, minus pain. So it's worse than CCC, ultimately! Repeating the message (as they do) that CFS is 'real' is irrelevant to doctors. This may make patients think everyone cares and things will get better, they won't without tests. Doctors need tests and observable signs to decide what a patient has wrong with them. The SEID, offers no ability to do this. Doctors will pragmatically only be offer sleep meds, anti-deps, and pain meds. This won't help severe ME at all, as already discussed as the symptoms of Dr Batemans' experience of CFS, is not that of severe ME sufferers, which is why we needed ME experts on the IOM panel to prevent this from happening!

    ME-ICC, has far more in depth advise about abnormalities in patients, because it was written by ME experts, not non ME experts (The IOM foolishly excluded them).

    Can I take it all in as someone with a scrambled brain? No. I sleep in my clothes and haven't has a wash in weeks. I do that because my brain is expended typing like this. Other patients lives and safety are my prime motivator, I thus type expending all available energy in raising matters, that matter to me. Naturally to expect me to divuldge and remember every page is impossible when I have this disease. I do remember the salient points of the IOM SEID though. I hope this is acceptable to you, and I wish I could be more articulate and learned, but I simply cannot. My brain feels like it's on fire and I have the Laptop on absolute low brightness in bed .

    My thread is about Dr Bateman's post on SolveCFS and my concerns her excitement doesn't reflect the needs of severe ME sufferers, who thanks to the IOM saying they have redefined ME CFS, now place severe ME in the SEID.

    The IOM SEID report is actually irrelevant to patients predicament, it's the actions of the report, what happens to us as a consequence.

    The cumulative actions of the IOM is that SEID is elements of the CCC with optional self reported symptoms. (British CFS/ME is a reduced Fukuda + PEM).

    So Dr Bateman, (who I believe to be a good doctor, well meaning, and expert in her field of CFS clinic treatment) should be more precise in her excitement, realizing (or obviously not) that the SEID is not a great day for severe ME at all with the SolveCFS article leads one to believe if one doesn't understand the huge predicament the severely affected remain in due to lack of access to service provisions, and inability to take the medications discussed to help sleep or pain. I hope that makes some sense.
  6. CBS

    CBS Senior Member

    @Research 1st
    You've provided an impressive overview of severe ME. ME does not remit and relapse. As you state, it may wax and wane but that is not the same as remission. I have made the mistake of describing a particularly fortunate response to a med as a remission, it wasn't as I was never entirely symptom free.

    Severe ME patients are almost never considered in public statements by our experts. That said, I know Dr. Bateman from a period of working on the CFI. She does have at least one patient who is entirely home bound (and she knows from close personal experience that comorbid conditions can lead to death).

    Clearly, the CAA paper you refer to wasn't written for severe ME patients and that's a huge mistake, not just in conveying an appreciation for the severity of this disease but also from an advocacy position. Mild to moderately I'll ME patients are lulled into a sense that this disease is far less devastating than it is. They don't appreciate the peril they face and by the time they do, they are often too sick to do much more than simply trying not to die.

    I crossed paths with Beth Unger at the Stanford Symposium last year. I asked her why the CDC wasn't taking step to simply count the patients who had died from ME (you count what you care about). She stammered something about it being TOO difficult. I responded that it would be a challenge but the small CFI project I participated in had done so and that she should speak with the epidemiologist the CFI had employed or those at the CDC. She was clearly uncomfortable with the entire subject.

    ETA: the CAA has clearly been "captured" by the CDC.
    Last edited: Feb 12, 2015
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  7. Ember

    Ember Senior Member

    I find it disturbing that the IOM Report supports its inclusion of ME with basic factual errors:

    “In the World Health Organization’s International Classification of Diseases, Tenth Revision,
    which will be implemented in October 2015, the clinical descriptions of ME and CFS are identical (sic)....”

    “While all of the criteria make clear that they are describing the same illness (sic), some vary in the terminology used to refer to the illness or to specific symptoms.”
    RustyJ, Joss, zzz and 1 other person like this.
  8. WillowTree

    WillowTree ME/CFS is NOT fatigue!

    I have always felt that these "fatigue clinics" are putting emphasis on the wrong thing and drawing attention to the wrong issue. I so desire that they would change their names and their emphasis to neuro-immune centers. Every time I hear or see the "fatigue" name of one of these clinics I shutter. What kind of a message do these names give about our illness, ME? I believe they only serve to perpetuate the misconceptions about our disease just by the names of the clinics themselves. Can't they see that? It blows my mind.
    Cheshire, Mij, NK17 and 6 others like this.
  9. Gingergrrl

    Gingergrrl Senior Member

    My sense of Dr. Bateman from her website is that she treats patients with fatigue of all etiologies and fibromyalgia but does not focus on ME patients in the same way as OMI, INIM, or Dr. Cheney & Peterson, etc.

    The End ME/CFS Project of OMF is currently raising funds to do a study of the most severely affected bed-bound ME patients. They feel that studying this group will find the most severe pathology and best chance of identifying the biomarkers (which I totally agree with). They discuss this project in their latest newsletter which I posted last week.

    I am not sure if the name of the project will change due to SEID but I hope it remains the same.
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  10. worldbackwards

    worldbackwards Senior Member

    If you're referring to the UK ones, I'm pretty sure that's the point!
    Wildcat likes this.
  11. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

    Are you grouping "mild/moderate/severe" patients into CFS, and the "profound" (home and bed bound), into ME? Or are you grouping all of them into ME, but calling the home and bed bound ones "severe" ME?
    Ecoclimber likes this.
  12. WeeRoo


    Loved this, I have a great joy of life, yet the SEID/ME/CFS is just getting worse! Joy is a separate issue and I question that it would be presented as part of critical treatment when someone is ill. Yes it helps healing and could be suggested as an addition to a regimen, but the guilt of not feeling the expected Joy is much, much worse!

    ''In order to thrive, anyone living with ME/CFS must repeatedly rejuvenate the will to live and to find joy in living, even while chronically ill. It can be done!
    Click to expand...
    A curious statement. There is no evidence at all that being able to find the 'joy of living' is achievable with ME, as there is no proven treatment options. Offering a patient false hope is not advisable where there is no science behind the claim, where such as huge heterogeneity exists using any ME CFS or SEID criteria, this becomes even more pressing.
    Cheshire likes this.
  13. Debbie23

    Debbie23 Senior Member

    With the emphasis on brain inflammation where does that leave those of use with severe ME, including all the cognitive symptoms, but 'normal' brain scans and EEG? Genuine question. :)

    Is it a case of 'you've had the wrong tests done' or 'the problem for you lays elsewhere, even though your symptoms are the same.'?

    I have, or have had, all the symptoms you list with regard to severe ME over the past fourteen years. My illness has been slightly better, On very rare occasions, but still rendered me primarily housebound and totally reliant on a wheelchair. For most of that time I've had to live life from bed in order to feel like I'm living and not just existing at all. But my EEG and mri are 'normal'. I'm just curious as to how this fits in here.
    justy likes this.
  14. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

    @Research 1st fantastically written posts about severe ME. I haven't been able to read anything yet but my first impressions from the diagnostic description was that it was, or should be, renaming the CFS part of ME/CFS as it doesn't seem totally relevant to those who have severe ME.

    It just seems they had a bash at deleting ME and replacing it with CFS and failed, so the compromise was ME/CFS now the same thing is happening again with SEID.

    Its unlikely i would drop the use of ME anytime soon because SEID doesnt seem to encapsulate severe ME so why change to something that barely covers what i have.
    justy and Wildcat like this.
  15. Ecoclimber

    Ecoclimber Senior Member

    @Research 1st

    Categorizing it as ME in the UK has not made a difference has it?
    You say the underlying characteristic is brain inflammation detected by MRI scan, right? Then, my question following @Dr.Patient ,how do you differentiate between brain inflammation causing neurological and one causing psychiatric illness
    Neuroinflammation and psychiatric illness
    Souhel Najjar15*, Daniel M Pearlman25, Kenneth Alper4, Amanda Najjar3 and Orrin Devinsky145


    Multiple lines of evidence support the pathogenic role of neuroinflammation in psychiatric illness. While systemic autoimmune diseases are well-documented causes of neuropsychiatric disorders, synaptic autoimmune encephalitides with psychotic symptoms often go under-recognized.

    Parallel to the link between psychiatric symptoms and autoimmunity in autoimmune diseases, neuroimmunological abnormalities occur in classical psychiatric disorders (for example, major depressive, bipolar, schizophrenia, and obsessive-compulsive disorders). Investigations into the pathophysiology of these conditions traditionally stressed dysregulation of the glutamatergic and monoaminergic systems, but the mechanisms causing these neurotransmitter abnormalities remained elusive.

    We review the link between autoimmunity and neuropsychiatric disorders, and the human and experimental evidence supporting the pathogenic role of neuroinflammation in selected classical psychiatric disorders. Understanding how psychosocial, genetic, immunological and neurotransmitter systems interact can reveal pathogenic clues and help target new preventive and symptomatic therapies.

    and Dr. Charles Shepard comments on calling it Myalgic Encephalomyelitis

    Let's try and remember not to mix apples with oranges, one must differentiate between a clinical research definition and a criteria for medical diagnosis.

    In a clinical research definition, you must exclude those patients with a prior history of psychosomatic or psychiatric disorders.

    Whereas for a medical diagnosis, you could create a situation where a patient who has comorbid condition of prior mental health issues and ME/CFS not getting treatment for either one. A biomarker must be found that clearly delineates between these two conditions. In MS, brain lesions was the significant biomarker.

    I am concern that there is not significant demarcation in the IOM's Report that rises to that standard. I was against the IOM and P2P. I believe NIH's manuvering was ass backwards. The funding should first go into research to find the biomarker in order to establish an effective criteria instead of the other way around.

    "What's in a name? That which we call a rose By any other name would smell as sweet."
    .Romeo and Juliet (II, ii, 1-2)
    Last edited: Feb 13, 2015
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  16. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

    Mackay, Aust
    Yes. When coupled with P2P efforts to erase most biomarker research up to present, the focus by IOM on fatigue as a symptom does not clear a pathway for future research, other than to preserve the current spending on epidemiological and psychiatric studies.

    Fatigue is not a disease, btw. Despite its seemingly emphathetic language throughout the report, all practical applications of the new criteria and name only serve to entrench current misconceptions about the illness.

    In my view this was quite deliberate, as it is quite beyond me how so-called experts can get it so wrong. The real question should be who are the stakeholders that really won out of this report, because the patients didn't.

    For example, most patient level support for the IOM came from a nexus of UK and US patient orgs, and patient advocates with previous history of placing support for government policy above patient welfare. Some of these orgs were directly involved in the formulation of the report and receive funding from the government.

    Direct involvement in government health policy (me/cfs-related, in particular) by insurance companies and funding linkages between specific researchers, insurance companies, some patient orgs and the MRC in the UK is well documented. This appears to be a mirror image of what is happening in the US. Unum has a notorious history in both countries.

    Patients should be aware that:
    • It is unlikely that additional funds will flow to biomarker research.
    • Processes set up by this report will hamper further research progress into non fatigue aspects of the disease for years.
    • Testing for comorbidities will be further restricted, as will access to specialists, because GPs only need sign off to subjective assessment from patient.
    • In the view of GPs, this will be a psychiatric assessment [fatigue, or extertion intolerance in the absence of comorbidities is a psychiartric issue]
    • Failure to adequately define a distinct disease as separate from psychiatric disorders, will have an impact on insurance claims.
    Last edited: Feb 15, 2015
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  17. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

    Mackay, Aust
    RE stakeholders in IOM report. Remember this: Suzanne Vernon's Letter to Dr. Bateman re: IOM

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