Saturday, November 8, 2008

Paying the Price

For several years, I threw up first thing every morning.  The doctors didn't ask questions, didn't listen to explanations, they just went for the fast answer: either stop binging/purging at 3 AM or don't eat whatever I'm having an allergic reaction to.  The subject would be changed before I could argue that the facts did not support their theory -- I wasn't eating anything before throwing up, the nausea started before I even had my eyes open.
I eat a varied diet, the only thing I have every single day is a glass of milk with breakfast.  A radical vegan jumped on that, and told me the problem was obviously that I'm lactose intolerant, I was throwing up because I'm allergic to milk, humans shouldn't drink milk.  She then stopped listening when I tried to point out it must be a very powerful allergy for me to throw up 2 hours before I was going to ingest what I'm supposedly allergic to.  I have several known food allergies, and when someone slips one of those past my radar, it only takes 20 minutes to react, therefore, I wasn't going to buy the explanation that it took 22 hours to react to yesterday's glass of milk.  Actually, some days, I would consume 1/2 gallon of milk between plain milk, hot chocolate, instant breakfast, cream soups, sour cream, pudding, etc., and didn't have any problem from it, so I wasn't convinced that I was allergic to milk. 
Eventually, I found a doctor who was more interested in finding the right answer rather than the fast answer.  He asked questions.  And concluded that the problem wasn't what I was eating, but what I was not eating: I'd be exhausted and collapse into bed in the afternoon before eating dinner, and not be able to get to the kitchen after I'd collapsed, so it was often 12-18 hours since I'd last eaten when I threw up.  Which meant that for 12-18 hours, my stomach acid had nothing to work on but my stomach.  Saltines and antacids at bedside solved the problem.  It was a simple solution, but it required asking the right questions to determine the cause rather than blaming the patient for bringing it on herself.
Like any teenage bulimic who throws up intentionally, I now have a mouthful of teeth rotted from years of daily baths in stomach acid.
The past few months, I've slowly been having the unsalvageable ones pulled.  My dentist doesn't like to pull more than two at a time, so it has been slow going.  And since we're moving slowly at getting them out, it'll be a while before that project is complete and we can get the partial denture made to put back in.  Eating's been "interesting" -- not only because my jaw hurts but because I don't have enough teeth in the front to bite into something.  Burgers and sandwiches and pizza are off the menu for the time being because I can't take a bite out of them; I can only eat them with a knife and fork, and most places that serve those things don't have forks on hand.  If I want a cookie, I have to use my hands to break it into small pieces, because I can't bite into that, either.  So, the diet's very limited: soup, yogurt, pudding, ice cream, mashed potatoes, Cream of Wheat, did I mention soup?  The other day, I cooked some pasta down to a gelatinous mess to make a casserole just for something different that didn't need to be chewed.
I'm not sure whether it's the anesthesia or a short-burst infection, but every time I have teeth pulled, I wind up sleeping most of the next 2-3 days.  Fortunately, I've stopped feeling guilty about sleeping when my body demands I spend the day in bed; it's not laziness, it's healing.  But still, it's time that could be spent more productively, like working.
What's all this going to cost me?  We're in the multiple-thousands, and haven't even talked about the price of the false teeth yet.  Yet one more price that I have to pay while the malpracticing doctors get off scot-free for the physical damage they caused by not listening.  And I'm sure they'd somehow manage to put the blame on me for their missing the diagnosis, despite my repeated attempts to get them to listen to the reasons their theory was wrong -- I wasn't standing in front of the fridge at 3 AM stuffing my face, I was too weak to get out of bed and walk that far, and I've never been an emotional eater.  (In fact, any of my former roommates could've told them that when I get upset, I clean maniacally and insist that I'm too upset to eat.  When I had a depressing experience, one of them had to actually force-feed me a hot fudge sundae ... as in "open the hangar, here comes the airplane", putting the spoon in my mouth, because I wasn't eating it when it was put in front of me.)  "Don't confuse me with facts, my mind is already made up"; they wanted to see a depressed divorcee eating her way to a size 100, and they were going to twist the patient's words to see what they wanted to see, and fill in the blanks with their imaginations rather than asking questions.
Doctors nowadays like to practice what Dr. Bell calls Game Show Medicine -- the first one to buzz in with an answer wins.  They don't want to take the extra few seconds to listen to ALL the information the patient is providing, and a patient who says "no, you're wrong, I don't do that" gets tuned out; busy-busy-busy, too busy to listen to the patient to be sure the diagnosis is correct.  If even one person had listened to me, heard me out instead of leaping to a conclusion, the problem could've been solved soon enough to save my teeth.  If a doctor had prescribed an anti-emetic instead of brusquely saying "don't eat what you're allergic to", I wouldn't be spending all this money on dentistry; it wouldn't have been the correct treatment, but it would've been better than the misogynistic assumption that because I'm a woman I'm too stupid to avoid foods that make me sick and can solve my own problem simply by changing what I eat.
Doctors don't like me.  I have enough spunk to stand up to them and tell them when they're wrong.  The only way for them to win is to interrupt, change the subject, leave the room, so that they don't hear the actual facts that contradict what they've imagined up to support their wrong theory.  But, I'm not in the doctor's office to massage his ego; I'm there to get the necessary treatment to get me back to work ... another fact they conveniently ignore while accusing me of not wanting to get well because I don't want to go back to work.
If the doctors had given me the right pills the first time I asked for them, I probably wouldn't still be in relapse 9 years later; I probably would have gone back to work a month or so after I got the correct treatment.  Instead, I was allowed to deteriorate so far without proper medical care that I may never return to work.
Dr. Bruno writes "In this new millennium medicine must not be about doctors' egos".  Patients can ensure a better result for themselves by finding ways to make doctors listen to them.  Shout them down when they try to change the subject.  Give them written memos (just let one try to deny he was given the facts when they're right there in his file in writing).  If you have to, get a lawyer to write them a letter explaining "experts recommend <describe treatment> and if you don't intend to provide the expert-recommended treatment to this patient, please contact me to explain why not." 
My doctors played "someone else's responsibility to sign that" with my disability forms for YEARS until my cousin, a medical professional in another state, told me to threaten them with a lawyer -- he assured me the last thing any doctor wanted was a judge telling them he doesn't care if the PCP thinks it's the specialist's responsibility and the specialist thinks it's the PCP's responsibility, someone's going to sign it or he'll hold the whole medical group in contempt.  The disability application is just that, an application; someone other than the doctor makes the final decision on whether you qualify for benefits, but you need the doctor's signature to get you into the system to be assessed.  (One of my stonewalling doctors was particularly peeved when he found out that while he had successfully run out the clock on my State Disability, I could, and did, apply for SSDI without his signature.  How dare I do an end run around him!)


Friday, November 7, 2008

CBT improves symptoms, not functionality

I thought the following might be of interest to the group.
This web link is to a site written by an NHS Consultant Psychiatrist for lawyers.
On CBT and Psychotherapy he states:
"It is probably the treatment of choice for mild cases of anxiety. But in complex cases, it is best seen as part of the treatment package, not the sole treatment offered."
"CBT AND REHABILITATION On its own, CBT may produce improvement in symptoms. However, symptomatic improvement may not necessarily be accompanied by improvement in function."
* * *
CBT can teach you to better cope with your limitations, make you more accepting of them, but it's not going to cure CFS because CFS is a biological condition with many similarities to MS and polio.  You certainly wouldn't try to brainwash a polio patient into believing that she could walk if she'd just get out of that wheelchair!
Pacing, too, can produce improvement in symptoms because you're not pushing yourself as hard, but again, research has showed that it did not improve productivity -- patients were not able to accomplish anything more, they just had fewer symptoms because they rested more frequently during the day instead of push-crash.
For some people with mild cases, anything that gives them 10% more functionality can get them back to work -- for example, if they are depressed over their pain, treat the depression -- you haven't cured the CFS, but you've given them the boost they need to return to their job.  However, most CFS patients are not depressed, so that treatment won't help them in the least because it's not addressing the true source of their disability.  And in our most severe cases, a 10% improvement may mean only that they can sit up in bed for a few minutes, or feed themselves instead of having to be spoon-fed by a caregiver.
The key is to find what works for you.



Wednesday, November 5, 2008

Are we just marking time?

I'll preface this with the usual, that in the British Commonwealth, CFS and ME are not exactly the same thing, but in the US it is essentially impossible to get an ME diagnosis, so if you're in the US, you have CFS if you have what Jodi calls ME.
*please repost* *please repost* *please repost* *please repost* *please repost*

Are we just 'marking time'? by Jodi Bassett, November 2008 (modified version)

Sometimes comments are made by some advocates about the lack of a unique
diagnostic test for Myalgic Encephalomyelitis, comments like:

"Until there is a single specific test for M.E., M.E. will not (and can not)
be taken seriously..."

"Until there is a specific marker for M.E., researchers will not/ can not
separate out M.E. patients from those with various unrelated 'fatiguing
illnesses' in their studies, unfortunately..."

"M.E. will be seen as psychological until we have a unique marker that
proves that it's a real disease ..."

"The only way things will improve for people with M.E. is if research can
give us a specific test for M.E. We must put everything we can into medical
research. Only further research and a test will give us the respect and
legitimacy we desperately need..."

There are a number of serious flaws with this approach, including the
following four main points:

1. There may never be a specific marker for M.E. or we may not have one for

Enormous sums of money have been spent searching for markers specific to MS,
Lupus, and cervical cancer - as well as a vast number of other diseases -
over many years and decades and have been entirely unsuccessful.

Of course, so very little time and money has been spent researching genuine
neurological M.E. patients and looking for the unique markers of M.E. that
we may indeed find that the task is a simple one and easily completed within
a short time frame. This is a very real possibility.

BUT, the possibility that we may NEVER find a unique marker for M.E. present
in 100% of cases must also always be taken into account. This is also a real

(This second possibility is also made far more likely - or even a
certainty - due to the fact that there are almost no studies being conducted
using a 100% M.E. patient population these days:, because of the bogus
disease category of 'CFS' and the newer but equally flawed concept of

You don't see people with Multiple Sclerosis commenting that of course
nobody can be expected to take MS seriously or do legitimate MS research
involving only MS patients until there is a specific MS marker, do you? Or
people who have Lupus or cervical cancer? So why is M.E. somehow different?
Scientifically at least, M.E. isn't.

There are of course no tests which can be used to confirm a (mis)diagnosis
of 'CFS,' but 'CFS' and M.E. are very different entities.

2. These comments seriously undermine the credibility of all the existing
M.E. research

These comments imply that the science supporting the fact that M.E. is a
distinct organic neurological disease is nonexistent, or 'shaky' in some
way. The reality of course is that the science is very clear that M.E. is a
distinct organic neurological disease, and it has been since at least 1969
when the World Health Organisation classified M.E. as an organic
neurological disorder in their International Classification of Diseases

Despite popular opinion, there simply is no legitimate scientifically
motivated debate about whether or not M.E. is a 'real' illness or not or has
a biological basis. The psychological or behavioural theories of M.E. are no
more scientifically viable than are the theories of a 'flat earth.'
They are
pure fiction. There is enough objective scientific evidence to prove the
basic facts of infectious, virally induced, acute onset neurological M.E. as
per Ramsay and Hyde and the more than 60 documented outbreaks worldwide etc.
many hundreds of times over
. (For more information see What is M.E.? Extra
extended version.)

These comments about our need for a unique diagnostic test before we can
expect to be given legitimacy also absolve those perpetuating serious abuses
of M.E. patients of blame - and so remove any impetus for them to stop the
enormous harm they are causing.

3. Even if we had a unique single test, this would change little or nothing

Even if there were a specific diagnostic test for M.E. discovered, there is
no reason whatsoever to presume that this piece of evidence would not be
ignored or misrepresented like the many hundreds of equally conclusive
pieces of evidence that we already have. Of course it would be!

There was enough hard evidence proving the organic and serious neurological
nature of M.E. many decades before the bogus disease category of 'CFS' was
even created.
  'CFS' is 'medically unexplained' or 'unexplainable' and
'mysterious' but genuine M.E. isn't and never was. Right from the start this
was never a scientific battle, it has always been a political one. If the
overwhelming evidence spanning over 70 years of severe testable
abnormalities, viral causation, more than 60 outbreaks and even the many
deaths from M.E. weren't enough, nothing ever will be.
No amount of science
alone will ever get us out of this mess. If it could have, it would have
already, as the science has been there for decades. If this were about
science, indeed the definitions of 'CFS' would never have been created in
the first place.

Yes, patients got rid of the 'hysterical paralysis' tag when it was proved
that Multiple Sclerosis was an organic neurological disease, but what is
happening with M.E. is completely different. We cannot stop our abuse in the
same way, because in our case it happened the other way around; we had the
evidence M.E. was an organic neurological disease already BEFORE the vested
interest group even got involved.

The problem we face is not that we don't have enough scientific evidence,
but that all the overwhelming evidence we do have is being purposefully
ignored for mere political and financial gain.

4. We already have a SERIES of tests that allow M.E. to be reliably

Most compelling of all, there are actually a series of objective tests which
readily allow a diagnosis of M.E. to be confirmed - in a manner similar to
the way MS and Lupus are diagnosed - RIGHT NOW!

If all tests are normal then a person does NOT have M.E. That is a fact.
M.E. is a distinct easily recognisable and testable disease with a number of
unique features
, it is not merely a diagnosis of exclusion as 'CFS' is.
These tests which together can confirm a M.E. diagnosis include:

SPECT and xenon SPECT scans of the brain, MRI and PET scans of the brain,
neurological examination, neuropsychological testing and the Romberg or
tandem Romberg test, various tests of the immune system  (including tests of
natural killer cells), insulin levels and glucose tolerance tests,
sedimentation rate testing, 24 hour Holter monitor testing, tilt table
examination, exercise testing and chemical stress tests, and physical exam.

On a purely scientific level, we have more than enough information to
reliably diagnose patients with M.E. using objective tests (and by taking
detailed case notes and conducting a detailed physical exam etc.)
just a few weeks of the onset of the disease. If the will and the funding
were there, scientists could right now very easily make sure that studies
contained a 100% M.E. population - just as they do with MS patients or
patients with Lupus and so on. Scientifically, it would be no more difficult
to do this for M.E. than with these other diseases. For more information
see: Testing for M.E. and Dr Hyde's The Nightingale Definition of M.E.

The problem is not that these tests don't exist, but that doctors - and many patients - are unaware of this information on testing, and so on.

In conclusion...

M.E. is not difficult to diagnose, or to distinguish from 'CFS' or any other
fatiguing illnesses. M.E. is also not 'difficult to define' or 'mysterious'
or 'medically unexplained' or a mere 'diagnosis of exclusion.' These are
characteristics of 'CFS' but not of M.E. M.E. is no more difficult to
diagnose though using a series of tests than is MS
. In fact, it has been
suggested that M.E. diagnosis is significantly less difficult and more
reliable than that of MS! We can also be a lot more certain about the cause
of M.E., compared to MS. The cause of MS is hotly debated, while the fact
that M.E. is caused by a virus is well established beyond doubt and there is
overwhelming evidence that M.E. is caused by an enterovirus.

This 'we need to wait for a test and more science before we can expect any
real change' approach to M.E. advocacy does us no favours. There are so many
enormous hurdles facing people with M.E., and M.E. activism and advocacy. At
times it seems overwhelming.....and it is overwhelming, but especially so
when additional hurdles are put needlessly in place by us.

Yes, having an idiot-proof one-step diagnostic test would be wonderful, and
of course we should do what we can to make that happen. But to imply that we
can't expect much to change until we have such a test is madness.

We are fighting so many powerful and influential groups, but what we have on
our side is ethics, reality and SCIENCE. That is HUGE for us. Even with all
their power and money we have a truly enormous advantage over them; but only
if we use it. The truth has to win out in the end, but we have to let it!

We must act now with the abundance of science we have, there is no need to
wait endlessly for more. We must dedicate ourselves to not ever compromising
on the facts of M.E., and doing everything we can to get the facts out
there. This is a political battle. We also need to know enough not to work
against our interests by promoting harmful propaganda to the public as if it
were fact, and to refuse to support groups and individuals who are guilty of
this. That is the only way we will get anywhere. (We also need far more
doctors and others to have the guts, intelligence and integrity to do the
same, it goes without saying. We can't do this alone.)

The unadulterated scientific facts about M.E. are mind blowing and utterly
compelling and credible
, but the 'CFS' and 'ME/CFS' propaganda isn't.

There will never be a better time to act than NOW. Things are only getting
worse for us as time goes on, not better. People with M.E. are being
horrifically abused and neglected by the medical profession and even friends
and family. They are suffering horribly and dying horribly (often
needlessly) every minute of every day. There is no time for any of us to
waste just 'marking time.'


(See this link to read the extra notes and quotes sections of this paper and
to download Word or PDF copies of this text.)

Please link to this paper using the above link only as only this page will
be updated.


To coincide with the release of this new paper, 'Testing for M.E' has been
fully updated, and now contains about 20% new material (taken almost
exclusively fom the Nightingale definition of M.E.). See:


Best wishes everyone,
A Hummingbirds Guide to Myalgic Encephalomyelitis:
Having [M.E.] is very much, medically, like living in a third-world country.
Why is there a gap between public perception and reality? Dr. Arnold
Peckerman reported on Web MD that [M.E.] patients might have what he calls a
"tricky heart." The word "tricky" seems simple, like a stuck lock that needs
grease, but Peckerman's heart discovery is harrowing. "Basically we are
talking about heart failure," Dr. Peckerman says of the type of abnormal
valve function in M.E. patients.
"[M.E.] is a progressive disease."
Peckerman believes this discovery might explain why [M.E.] patients become
so ill from simple movements. "Typically we see this in people with
three-vessel heart disease," adds Emory University cardiologist Joseph I.
Miller III, MD of the abnormalities. Peggy Munson 2002

* * *
If your doctor thinks that because the basic first-round blood tests are normal, there's nothing wrong and you need your head examined, tell him he needs his head examined.  Those common tests are supposed to be normal in CFS.  There are multiple references in this blog to tests that will be abnormal, and those are the tests you must insist on having done.
While it's true that there's no single test for CFS, as Jodi says, there are a series of tests which, in a certain pattern of normal/abnormal, will definitively point to CFS, can't be anything else.  I repeat, there are objective tests that will be abnormal in CFS, and anyone who tells you there's no objective proof that CFS patients are sick doesn't know what he's talking about.  Have them contact me and I'll point them toward books and websites that they'll find very educational ... if they're open-minded enough to be willing to learn.  (A lot of CFS detractors already have their minds made up and no amount of information will convince them.)


Scientific Information about Serotonin/Neurotransmitters
Dr. Murphree ( has a theory that your sleep pattern shows what deficiencies you have (read his book for details) and the treatment for my specific pattern was to build serotonin.
5HTP + Vitamin C + B Complex + Magnesium = serotonin
Start with 50mg of 5HTP and increase it till you fall asleep naturally.  (In one place I saw a maximum dosage of 250 and in another I saw 400.)
It's not enough to help me in winter when I ache worse, but it did help in summer.


Monday, November 3, 2008

English-language petition for recognition of fibromyalgia in Europe

European Network of Fibromyalgia Associations Petition - English version:

Fibromyalgia Global Impact Survey Final Report
[Moderator's note: a note for dial-up readers - this file is 5.5MB and may take a long time to download]


Sunday, November 2, 2008

Saline IVs and Placebo Response

This is more just a general comment about saline IV's and 'placebo' response in CFS treatment studies.
  As an example, Stephen Straus's early Acyclovir study found that groups of patients given intravenous Acyclovir and patients given plain IV's had the same number of improvements in each group. He surmised this to be due to a 'placebo' response.
  However, it has since been noted by many different CFS researchers that CFS patients have decreased total blood volume; with Dr. David Bell, a renowned CFS doctor/researcher/patient advocate saying the following about IV treatment for CFS- "all things considered, it is the most effective treatment for severe ME/CFS that I have found in my 21 years of looking."
  How many other potential treatments for CFS have been studied with saline IV's used as the 'control', and what effect has this had on the results of these studies?
* * *
Several researchers have found that CFS patients don't have a placebo response.  That requires believing the doctor when he says "this will help".  We've been lied to too often.
I took part in a clinical trial, where every patient would, at some point, be on placebo, in order to gauge which patients were simply having placebo response.  I could tell the first day of each pack of pills whether they were study drug or placebo, because drug worked 100% of the time and placebo didn't work at all. 


Chronic pain and fatigue: Associations with religion and spirituality.

Chronic pain and fatigue: Associations with religion and spirituality.

Pain Res Manag. 2008 Sep-Oct;13(5):383-8.

Baetz M, Bowen R.

University of Saskatchewan, Saskatoon, Canada.

PMID: 18958309

BACKGROUND: Conditions with chronic, non-life-threatening pain and
fatigue remain a challenge to treat, and are associated with high
health care use. Understanding psychological and psychosocial
contributing and coping factors, and working with patients to modify
them, is one goal of management. An individual's spirituality and/or
religion may be one such factor that can influence the experience of
chronic pain or fatigue.

METHODS: The Canadian Community Health Survey (2002) obtained data
from 37,000 individuals 15 years of age or older. From these data,
four conditions with chronic pain and fatigue were analyzed together
-- fibromyalgia, back pain, migraine headaches and chronic fatigue
syndrome. Additional data from the survey were used to determine how
religion and spirituality affect psychological well-being, as well as
the use of various coping methods.

RESULTS: Religious persons were less likely to have chronic pain and
fatigue, while those who were spiritual but not affiliated with
regular worship attendance were more likely to have those conditions.
Individuals with chronic pain and fatigue were more likely to use
prayer and seek spiritual support as a coping method than the general
population. Furthermore, chronic pain and fatigue sufferers who were
both religious and spiritual were more likely to have better
psychological well-being and use positive coping strategies.

INTERPRETATION: Consideration of an individual's spirituality and/or
religion, and how it may be used in coping may be an additional
component to the overall management of chronic pain and fatigue.

* * *
This may explain why a majority of CFS patients are NOT depressed.  They've put their problems in the hands of a higher authority.
It's always been my feeling that God wants me here for a reason.  At first, I wasn't sure what lesson I was supposed to be learning from this trial, but then I realized that everything I'd done in life led up to being prepared to be a CFS activist.
So, here I am, doing what I was meant to do.     

Petition Against Abuse in Treatment Centers

Thank you for signing the "Wantoestanden in de referentiecentra" petition at website.
Your signature is valuable and makes a real difference. Please encourage others to sign the petition as well. To do that, just forward the text below to everyone who might be interested:


I wanted to draw your attention to this important petition that I recently signed:

"Wantoestanden in de referentiecentra"

I really think this is an important cause, and I'd like to encourage you to add your signature, too. It's free and takes less than a minute of your time.

* * *
If you want to read the whole thing, which is in Dutch, you can translate it with Babelfish.  Succinctly, CFS treatment centers are using CBT and GET, despite tons of research showing they are useless and may even be harmless.
After you sign the petition, you'll be taken to a donation page.  This does not go to CFS research, it goes to the petition website.  Just close the page; your signature has already been added, regardless of whether you donate.