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 http://solvecfs.org/pearls-of-wisdom-from-an-mecfs-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. Nausea. Confusing (waking up not knowing where you are). Night terrors. Thirst. Sweating. Hot flashes/flushes. Epilepsy/seizures. Acid Reflux, coughing up phlegm, choking on phlegm that comes from laying down. Asthma. 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. Conclusion: 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'.