Tuesday, July 30, 2013

Doctors recommending exercise for ME patients?

I'm saving this as my standard answer to any doctor recommending exercise to patients with M.E.; you are welcome to yoink and use it in full.

“Post- Exertional Neuroimmune Exhaustion (PENE pen-e)

Normal fatigue is proportional to the intensity and duration of activity, followed by a quick restoration of energy. PENE is characterized by a pathological low threshold of physical and mental fatigability, exhaustion, pain, and an abnormal exacerbation of  symptoms in response to exertion. It is followed by a prolonged recovery period. Fatigue and pain are part of the body’s global protection response and are indispensable bioalarms that alert patients to modify their activities in order to prevent further damage.

The underlying pathophysiology of PENE involves a profound dysfunction of the regulatory control network within and between the nervous systems. This interacts with the immune and endocrine systems affecting virtually all body systems, cellular metabolism and ion transport. The dysfunctional activity/rest control system and loss of homeostasis result in impaired aerobic energy production and an inability to produce sufficient energy on demand. A test-retest cardiopulmonary exercise study revealed a drop of 22% in peak VO2 and 27% in VO2 at AT on the second day evaluation. Both submaximal and self-paced exercise resulted in PENE. These impairments and the loss of invigorating effects distinguish ME from depression.”

From the International Consensus Primer for Medical Practitioners. 

primer, noun: an elementary textbook that serves as an introduction to a subject of study or is used for teaching children to read: a first-year philosophy primer – OED

Any doctor not aware of this information should go back to the primer and study. Thank you.

Disabled and Dissed

Okay, I admit my main reason for blogging this right at the moment, is to let off steam. But also somewhere in my adrenaline-screaming, fight-don't-fly, tortured brain, I also know that this is not unusual, that other disabled people get this same sort of treatment daily, as a matter of course, so I'll blog it for anyone who might possibly be labouring under the sad delusion that disabled people get "entitlements." But as I confess below, we do get Special Treatment.

Believe me:

Cure me...

And just watch me:

I would gladly go back to work, get a medical plan, and have this whole situation taken care of without going through the "special" channels for disabled people.

But no, we get special treatment.

My daughter has been waiting four years to get her wisdom teeth removed. They are now severely impacted and causing her so much pain.

Three oral surgeons have agreed that due to the nature of her disability, which makes her highly sensitive to all medications, this must be done in a hospital under the supervision of an anesthesiologist - not the usual office procedure - or she could die - so they have referred us on.

The oral surgery department of UCSF agreed to extraction in hospital, but the health plan which administers MedicAid approval (Partnership, whose partnership appears to be with investors, so their purpose is to serve as a strict gatekeeper declining requests for treatment) declined.

So UCSF explained the medical necessity to them via appropriate paperwork and --- there the whole thing stalls, with Partnership telling me to call UCSF, and UCSF telling me to call Partnership, and neither party returning my calls nor those of a case worker trying to help me.

So, I call the Disability Legal Services Center (DLSC) and they say no, call agency B; they help people with MedicAid problems. Agency B says no, we don't do this, we only help with MediCare, so call Agency C. Agency C says no but refers me to a specific person in the DLSC who called me back just now, and said no. Why? Because she doesn't understand the sensitivity to medications, of people with M.E.

She said, "Our lawyers said no because the wisdom teeth have nothing to do with your daughter's disability." She suggested I should call Agencies D, E and F and ask them. (Incidentaly, every stressful phone call is a huge effort for me, and a day where I must make three business/health-related phone calls is a day where I will not have the energy left to cook a meal.)

So I explained the entire thing AGAIN, to this nice lady from DLSC. This time I included the story of my near-death during an out-patient procedure, the anesthesiologist not having believed me when I explained my sensitivity - how painful it was to return to my body, how I opened my eyes to see the anesthesiologist standing at my feet, face white as a sheet, saying, "You weren't kidding: you really ARE sensitive!" and how the medical team then hustled him away.

She was impressed. I will hand it to her: she got it then.

So can I explain directly to the lawyers, myself, so they will see that this is indeed disability-related? She says, "No, it has to go through me." Ahhh, gatekeepers. So she will ask the one lawyer who isn't on vacation, again, before she herself goes on vacation, and get back to me "either way."

Either way?

They will only say no to helping me, if she explains it wrong again.

But I must wait, meanwhile calling agencies (or Little Cats) D, E and F, to explain it to all of them, and depending on their guidelines, mission, funding, staffing, workload and of course cranial capacity and compassion, probably be told once again to move along.

There are always more and smaller cats, waiting in each successive hat.

So I asked, "Okay, meanwhile, do you think I should call the ACLU?" mainly to raise the specter but actually also because at this point I am damn well going to call them. "Because, you know, the other way this seems to relate to disabilities is because ANY person with ANY disability who was getting this kind of run-around might begin to suspect that it could possibly be a case of discrimination, as disabled people whether quadruple amputees or ME patients are all a class of people who experience discrimination."

She can't say whether the ACLU can help me but says it can't hurt to call.

If only she knew how much it can hurt to call, how much it hurts to make any of these phone calls.

Like I said near the top, can I please just be cured now and my kid as well, and get her wisdom teeth out the old-fashioned, non-disabled way, with none of this special treatment?

Okay, on I go with my day, which promises to be an interesting one.

But as I head out the blog door and into the slog world, let me take this opportunity to link once again this potentially life-saving information for people with M.E. who must undergo dental procedures or any type of surgery. Do make sure your dentist and doctor understand this and keep it in your file, and that any anesthesiologist under whose care you come, understands it as well. And good luck getting your insurance company to accept it, too.



Thursday, July 25, 2013

What Is Myalgic Encephalomyelitis?

 Poster courtesy ME Awareness: Words & Pictures https://www.facebook.com/MEAwarenessPics
ME is controversial because some psychiatrists and drug companies earn piles of money by obfuscating the facts already known about the disease, and by obstructing the finding of any more facts. Despite the Psych Lobby's being in denial, the truth is, ME is classified by the World Health Org as a neuro-immune disease.

The quick explanation full of medical terms: (we return to layman's terms below)

 "Myalgic Encephalomyelitis (ME): complex, acquired multi-systemic disease

Pathophysiology: Profound dysfunction/dysregulation of the neurological control system results in faulty communication and interaction between the CNS and major body systems, notably the immune and endocrine systems, dysfunction of cellular energy metabolism and ion transport, and cardiac impairments.

Cardinal symptom: a pathological low threshold of fatigability that is characterized by an inability to produce sufficient energy on demand. There are measurable, objective, adverse responses to normal exertion, resulting in exhaustion, extreme weakness, exacerbation of symptoms, and a prolonged recovery period."

Above from http://www.hetalternatief.org/ICC%20primer%202012.pdf

So basically we are in pain and our energy is depleted, and the least effort (physical, mental or emotional)  increases our pain and exhaustion.

Typically, we keep trying to return to normal activity, only to be slammed down again and again with "crashes," of this relapsing and remitting disease. On good days, we are in danger of doing too much and exacerbating our illness. Rest is vital, exercise is damaging.

Ultimately we develop holes in the white matter in our brain, nodules on our spinal chords, rare leukemias, cancers and heart disease, and if those don't kill us soon enough we commit suicide.

From those causes we die 20 years younger than average.

*(see note at bottom re: above-linked study)

Doctors who have treated this and other illnesses say that patients with severe ME are sicker than their patients with cancers or late stage AIDS. Researchers have not found the cause but are pursuing possible retroviral and enteroviral culprits. Genetic predisposition and environmental factors my play roles.

Journalist Hillary Johnson has documented the twisted twists and turns of ME research in her excellent book, Osler's Web,  updating the horror story in this recent Discover article: http://discovermagazine.com/2013/march/17-shadow-virus#.UfFBLW2ZbN

Similarly horrific and more recent developments in the story of research suppression and the silencing of scientists are disclosed in Dr Judy Mikovits book with Kent Heckenlively, Plague.

Misnomers, alternate names and/or related diagnoses: CFS," CFIDS, Chronic Epstein Barr, Chronic Lyme Disease, Gulf War Illness, Fibromyalgia, and more...  Please forgive the use of the misnomer "CFS" in this post. What we're talking about is Severe ME but sadly the CDC clouded the issue by changing the official name, which forced doctors and researchers to use the misnomer, which means we have that "CFS" label to contend with when we quote them. The correct name of the disease is Myalgic Encephalomyelitis.

The most severely ill patients (about 25%) are bedridden, in such great pain, so profoundly exhausted, and so sensitive to light and sound, that they must lie in a darkened room, eyes closed, can't wash or dress, may need assistance toileting, and may need to be tube-fed.

ME patients desperately need help from people with energy to spread this information and do a little advocacy work, and if you can, please contribute to one of the organizations listed in my previous post in this blog: http://itsonlymeitsnotmymind.blogspot.com/2013/07/wanna-donate-to-help-patients-with-me.html

*Note setting the record correct re Mortality Study
In respect to the four victims in the Mortality study it must be noted that while the findings of damage to patients are sound, the study linked above contains disinformation. It described the second of the four victims (Sophia Mirza) as having refused to eat and drink and refused medical care. That's refuted in this ME Association link http://www.meassociation.org.uk/?p=3765  as follows:

The following information was supplied by Mrs Criona Wilson, mother of Sophia Mirza, on 24 January 2011:

“The 2nd person, a woman aged 32, (Sophia Mirza) was reported to have refused to eat and drink. She was supposed to have refused to see a doctor.” Both of these statements are incorrect.

“The doctors had treated Sophia, who had severe ME, as being mentally ill, despite the fact that The World Health Organisation states that it is a physical disease. They forcibly sectioned her in a mental hospital. Having been released from there by a tribunal, her doctor removed her from that practice. The doctor in the second practice told me that ME was a mental illness and that she let patients ‘get on with it’. Sophia was terrified of calling on that doctor, as previously it had been made clear to her that she could, once again, be ‘sectioned’. Because of her severe symptoms she was unable to eat or drink, save for a minute amount. After she died the doctor refused to visit to confirm Sophia’s death. Apparently they too had removed Sophia from their practice, four months previously and without our knowledge. There was no help for Sophia.

“Sophia had to suffer in unbearable agony and die alone. To infer that it was Sophia’s ‘free choice’ is not true. Being frightened of the doctor and being unable to eat or drink are totally different from refusing to see the doctor and refusing to eat.”

Críona Wilson (Sophia Mirza’s mother) www.sophiaandme.org.uk "

Wanna donate? To help patients with ME and other Neuro-Immune Diseases...

Below is the work of a fellow ME patient: the activist extraordinaire and captive unicorn Lilan Patri. She knocked herself out, pretty literally, pulling this together for us all: some organizations endorsed by Actual Patients, and worthy of your support. Please, do help. - Creek

Lilan Occupies Her Bed. The excitement is palpable. (Yellow police tape marking protest area)

Wanna Donate? Some ME/CFS Options

16 July 2013 at 19:11
Hi Good People,

Recently a friend asked me how she might best make a contribution toward ME/CFS research. Having been somewhat out of the loop, I posted on FB for suggestions from fellow patients. I was surprised how few I got, but then... not surprised. Two years ago, the ME community put all its faith in the WPI and its XMRV research and worked tirelessly to fundraise. Then, oh my God, the WPI turned into a BIG HOT MESS--and since then many patients I know have been hesitant to throw themselves behind any one organization and downright leery of soliciting donations. But I still get people asking me. So I compiled the suggestions I did get, and I snooped around online to check them out, and I made a list.

Let it be known: I am not a scientist. I do not have a brain for facts. I do not understand a good half of what I read on these research sites. I cannot predict which institute will go up in flames. What I wrote might be exquisitely inaccurate. I am not an authority on anything (except probably housebound loungewear and my cat Leopold). I also might have left off the BEST organization EVER.

Okay, good. Now, these places, I think, might be worthy of donations. A few research institutes (my top picks first) and, to sate all appetites, a few advocacy groups below.

Thanks for caring enough to read this far. And thanks to anyone who feels like donating.

Snuggles from Berlin,

Research Research Research


The highly regarded brainchild of the highly regarded Dr. Dan Peterson, who has been treating and studying ME/CFS patients in Incline Village for over 25 years.

"Simmaron Research is a nonprofit organization dedicated to advancing scientific research, potentially leading to the discovery of diagnostic markers and effective treatments that will ultimately improve the quality of life for people suffering from CFS/ME and related neuroimmune disorders."

Simmaron implements a multidisciplinary approach (immunology, virology, genetics, exercise physiology) and cites as novel its collaboration with leading scientists worldwide as well as a repository of biological samples and data records from nearly 3 decades worth of patients.

Simmaron is now seeking donations for two new studies: Arthropod-Borne Disease in Post-Infectious Fatigue; and Prevalence of Clonal T-cell Receptor Gamma Gene Rearrangements in CFS Patients with Herpes Virus Infections. Ongoing studies include (among others) pathogenic mechanisms of ME/CFS,  cytokine abnormalities in spinal fluid, and multi-site clinical assessments to establish subsets of ME/CFS patients. Please check the Website for more details. Gamma gene rearrangement?! I know nuffink.


With much focus on clinical and genomic data and biomarkers, OMI appears to be another scientifically advanced contender. OMI spreads its reach to a range of (challenging) illnesses.

"The Institute is currently focused on understanding, developing treatments, and finding cures for neuro-immune diseases including ME/CFS, Autism, Multiple Sclerosis, and other conditions [Lyme]. There are also plans to apply the Institute’s model to a range of diseases including cancer and Alzheimer’s—diseases which have proved difficult, if not impossible, to decode and treat using today’s standard approaches."

In regard to ME/CFS, Open Medicine's priority is the multi-pronged OMI-Merit Initiative, which includes trials of Rituximab and Valcyte (alone and in combo), the development of an international Neuro registry and Biobank (data sampling), assessment of the efficacy of viral testing, of current commonly used medications, of natural and OTC substances--and a whole lot more. All on the fancy Website.


This center is in its infancy. There's no way to know its efficacy. Eh, I'm including it anyways: I like the initial study, and Dr. Derek Enlander has good cohorts on board plus the backing of a major medical school/ hospital. There's potential here. Let's see if this baby flies.

"The ME/CFS Center at Mt. Sinai is currently conducting a Post Exertional Malaise trial, due to be completed this year. The ME/CFS Center at Mt. Sinai has made it clear that they are interested in collaborating with other institutions in the pursuit of concrete research into this illness."

The current effort would be (perhaps?) the first large-scale study to demonstrate the detrimental impact of exercise on ME/CFS patients, and could potentially debunk the (bunk) UK PACE trial of 2011, whose (bunk) outcome further inculcated the (bunk) treatments promoted by the CDC... and every other governmental body everywhere.


Checks made out to Mt. Sinai Medical Center, with Fund Number 02855525 specified in the Memo section and mailed to:

Mt. Sinai ME/CFS Center
860 Fifth Avenue
New York, NY 10021

Advocacy, Awareness, Treatment


An education and advocacy group whose most pressing goal is to open the first clinic in West Sussex with a multidisciplinary approach to ME, and serving the severely afflicted. West Sussex has one clinic for over 4000 ME patients, where no drugs, no supplements, no blood tests and no treatment other than a few group therapy sessions are given.

Beyond this, the Alliance's aims include training programs for GPs, reassessment of all patients using International Consensus Criteria, and reorganization within the UK medical system such as the shift of ME/CFS services from mental health to neurology.

RESEARCH: The Alliance also hopes to study methylation and glutathione depletion  in patients with toxicity, Gulf War Syndrome, ME, and in World Trade Center recovery workers.


A grassroots organization devoted to building awareness about neuro-endocrine-immune diseases (ME/CFS, fibromyalgia, tick-borne infections, multiple chemical sensitivities / environmental illness, and Gulf War syndrome) and advocating for better government policies pertaining to these diseases.

"Our main goal is to improve patient quality of life, which includes direct assistance and increasing access to knowledgeable healthcare. This is done through medical professional educations and working toward creating an NEI (neuro-endocrine-immune) Center."

CHANGE for ME (Australia)

Founded by my friends Lee Lee and Amara and based in Australia, Change for ME has in its short history staged a live event (a major coup for the bed-bound!) and spread the word online. Without awareness, there can be no change: this is its philosophy.

"We advocate for greater understanding of the condition in the medical community and general public; increased support and medical access for ME and CFS sufferers to help address the poor quality of life and elevated risk of suicide; more equitable financial support for sufferers through Medicare and PBS."