Friday, October 3, 2008

Being a bad patient may save your life

Being a bad patient can save your life

By Elizabeth Cohen
CNN Medical Correspondent
(CNN) -- You probably know Evan Handler as Harry Goldenblatt, Charlotte York's husband on HBO's "Sex and the City," or as Charlie Runkle, the agent for David Duchovny's character on "Californication." What you probably don't know is that he's a passionate patient advocate, based on his experience being treated for leukemia in the mid- and late-1980s.
Actor Evan Handler, currently appearing in "Californication," defied statistics and survived leukemia.
In many ways, Handler is the ultimate empowered patient. "I learned that I must always remain in control, double-check everyone's work, and trust no one completely," Handler wrote of his approximately eight months in the hospital. "I must have been sheer hell to be around. But I know that my cantankerousness saved my life on several occasions."
In his books "It's Only Temporary," and "Time on Fire," Handler wrote that during his months in the hospital, he was given intravenous drugs that were supposed to go to another patient, that nurses tried to give him medications his doctors had forbidden for him and that staff members refused to follow the hospital's posted hygiene precautions for immunosuppressed patients like himself.
Handler survived when statistics said he shouldn't have.
He endured round after round of chemotherapy, one infection after another and a bone marrow transplant. In this conversation with CNN Medical Correspondent Elizabeth Cohen, Handler discusses firing your doctor, tattooing medical directives on your stomach and the importance of not doing exactly what you're told.  Watch more on what you might gain from being a 'bad' patient »
Elizabeth Cohen: Were you a "bad" patient?
Evan Handler: The irony of "bad" patients is that they actually do better for themselves. ... There were hundreds and hundreds of instances where my being a "bad" patient saved my life.
Cohen: You write about how nurses tried to give you drugs to which you'd had "horrendous adverse reactions" even though doctors had explicitly written in your chart you shouldn't have those drugs. A friend of mine had a similar problem, and we decided maybe he should have hung a sign around his neck with a list of the drugs he wasn't supposed to get.
Handler: That doesn't sound like a bad idea. [A doctor once told me about] a registered nurse who had a "Do Not Resuscitate" order tattooed on her abdomen. She said she felt it was the only way her wishes would be respected.
Cohen: You write about how you became "a criminal of sorts" by forging your doctor's signature on authorization slips so your bloodwork would be done by a lab that ran the tests more quickly. Were you afraid you'd get caught?
Handler: Nothing bad is going to happen to you if you don't do exactly as you're told. They weren't going to put me in jail. I worried about getting caught only because then I wouldn't be able to do it any more.
Cohen: You describe your first doctor as being nasty, hostile and disrespectful. He yelled at your father for calling him on the phone with a question about your care. He yelled at you when you were in the middle of chemotherapy and came to see him with a rash and a fever because the fever was only 100 degrees. Did you wait too long to fire him?
Handler: Oh, yeah. Doctors had told me that I would be endangering my care if I switched doctors, but that advice was criminal. Look, the only way to change things is through the marketplace. Recently I needed to have something in my mouth looked at. The doctor performed a biopsy without lidocaine -- just put a blade in my mouth and cut without telling me. I never went back, and I wrote him a three-page letter. You should leave a bad doctor, and if you have the energy, tell them why you left.
Cohen: When you were being treated for leukemia, you were very, very sick. You said sometimes you were barely conscious. How'd you keep up the stamina to keep double-checking everyone's work?
Handler: I was lucky to be able to maintain my strength and do it as long as I did, and my girlfriend at the time, Jackie, was willing to sit by my side and advocate for me, and she was very skilled at doing it. You wonder, how many people die from illnesses because the strength to keep up vigilance runs out? 


Call for Papers for March Conference

Call for Papers
9th International IACFS/ME Conference

Developing Interdisciplinary Collaborations: Chronic Fatigue Syndrome, Fibromyalgia, and Related Illnesses

March 12-15, 2009

Reno, Nevada (Lake Tahoe area)

DEADLINE extended to November 1st

The Conference Planning Committee of the International Association for Chronic Fatigue Syndrome/ME (IACFS/ME) invites potential presenters to submit abstracts for our next biennial meeting, which will be held in Reno, Nevada, March 12-15, 2009. Integrative conference themes will focus on fatigue, pain, sleep, pediatrics, cognition and brain function in Chronic Fatigue Syndrome, Fibromyalgia, and Related Illnesses (e.g., cancer fatigue). In addition, different segments will address advances in assessment and treatment (from biological to behavioral), as well as new developments in immunology, virology, and neuroendocrine research. There will also be lectures and professional workshops on “newest clinical protocols”, “what genes can teach us” and “CFS state of the science / art; where does the research go from here?”

Papers will be reviewed by the Conference Planning Committee for selection as an oral lecture, short oral presentation, or poster presentation. Attendees to IACFS/ME conferences are primarily biomedical and behavioral professionals, including clinicians, academic researchers, and educators. Papers should reflect this level of experience and expertise. It is anticipated that this event will be accredited for continuing medical education for Category 1 CME (physicians), CNE for nurses, and CPE for pharmacists. Abstracts selected will be published in the conference syllabus.

Abstracts must be non- commercial and focus on one or more of the areas indicated above.

Abstract format: one page maximum in length (single spaced, 12 point font, one inch margins), listing all authors with presenting author first in bold, affiliated institution(s), and these headings in the text: Objectives, Methods, Results and Conclusion. Include at bottom of page: presenting author’s full name, academic credentials, and mailing address with city, state or province, zip or postal code, country, and E-mail address.

Standard Submission Process
Please E-mail abstracts (as Microsoft Word attachment or in body of e-mail) to no later than November 1, 2008.

Presenting author will be contacted in November 2008 and advised if submitted abstract (s) or short oral presentation, the presenting author will be required to provide a Curriculum Vitae and complete necessary forms as directed in order to comply with AACME requirements for accreditation. Authors will be advised of the date and time of their presentation. If selected as a poster presenter, presenting author will be provided with specifications for presentation and display.

Submission of Rapid Communications (Posters Only)
Using the same abstract and submission requirements above, potential presenters may submit a poster abstract by January 15, 2009. Accepted Rapid Communications posters will be published in the conference program.

Questions: Regarding papers or the submission process should be directed to IACFS/ME Administrative Office, Attention: Greg Fillmore; E-mail: Phone 847-258-7248
Learn the benefits of membership!
The International Association for CFS/ME
27 N. Wacker Drive Suite 416
Chicago, IL 60606

Open Letter to IACFS/ME members and fatigue-interested professionals

Dear IACFS/ME Member:

I am hoping that the March 2009 IACFS/ME International Meeting to be held in Reno, Nevada (USA) will be our best meeting ever! The breadth and depth of presentations, literally from around the world, will afford each of us an opportunity to discover new facets of CFS/ME and related illnesses. Just as importantly, this international meeting will afford us an opportunity to discuss our interests with colleagues and friends, and to learn of the interests and experiences of colleagues previously unmet.

The IACFS/ME International Meeting also affords us an opportunity to increase the breadth of scope of CFS/ME research by piquing the interests of young investigators and investigators to-be. What better place to introduce graduate students or a younger colleague to the opportunities of CFS/ME research and complex issues that need to be addressed than at this meeting?

Please consider bringing a graduate student or younger colleague to the March 2009 International Meeting. More senior investigators will benefit from discussions with individuals whose training is somewhat different from theirs and perhaps have different approaches to research challenges. Younger investigators and graduate students will benefit from the experiences of mature colleagues who have worked on various aspects of CFS/ME and may spark a new interest in those who are at the beginning of their careers.

In short, make the March 2009 International Meeting more robust and more stimulating by encouraging a younger colleague or graduate to join us and participate in our biennial event.

I am looking forward to seeing the two of you at the meeting!


Kenneth J. Friedman,

Chair of Membership

* * *

Literally, if it kills me, I plan to be in Reno for this conference.  It's two hours up the freeway, a little longer by Amtrak, and will give me a chance to talk to the doctors about things that I'd like to see researched, and how much money needs to be raised in order to get that research done.


I've been advised that the registration on the CFS Facts URL has expired, so now we can buy it back and get it back online!

Rome was not built in a day, and neither will this be, but I do have two good computer minds working on a solution to transferring this blog to that site in its entirety.  So, even if we're not up and running there before this blog is removed by AOL at the end of the month, check back with regularly until you see that we are up and running.

And hopefully, once I'm blogging on a site where my webmaster can track IP numbers, a certain group of constantly abusive commenters will be proven to be one person and her sock puppets and we can expose her by name.  Or maybe the fear of being exposed and sued will stop the attacks.

Wednesday, October 1, 2008

The Latest from NCF is adding a page to its website with relevant patents.

Did you know that in the early 1990s, Elaine DeFreitas found a retrovirus in the blood of CFS patients?  Her tell-all CFIDS Associated Virus (CAV) patent will be one of the first that NCF posts.  In plain English, anyone who says CFS is all in your head is almost 20 years behind the times!

There's also a patent for a neurasthenia virus, which produces leukemic cell types (a connection NCF is now researching) and one for a stealth virus/ciguetera toxin.

The truth about CFS is out there, and it's not what CDC wants you to believe.  There are plenty of websites that have the truth, which comports with the patients' experiences, that the problems "all started with a virus".  The incidence of mental illness in CFS is no higher than in the general population.

Anyone who wants to dispute whether CFS is a real, physical illness, needs only to read these patents.  Doctors who have seen actual CFS patients (as opposed to those who have only read about it or seen patients who were misdiagnosed) have repeatedly observed that they're sicker than late-stage AIDS patients.  Autopsies have proven we're not imagining things ... there's inflammation of the brain and spinal cord that can explain all the symptoms.

I don't care who tries what sort of torture to get me to change my story, I will continue to tell the truth: I was happy and healthy until one day in February 1987 I collapsed with a 105 fever and what appeared to be stomach flu, and I've never felt completely right since.  Researchers have found enterovirus (i.e., stomach flu) in the blood of CFS patients.  It adds up for me.


Hmmmm reports:

Study Confirms Pain is the Cause of Osteoarthritis, Not the Symptom
Pain transmitted along nerves to the spinal cord stimulates inflammation that travels back to the joint - BUT interruption of the cross-talk allows the joint to heal. Existing drugs accomplished this in animal trials.

Bodily Pain Frequently Unrecognized & Misdiagnosed Sinusitis Symptom
Georgetown experts conclude pervasive bodily pain is a frequent, unrecognized symptom of sinusitis not dealt with in medical training and severe enough to be misdiagnosed as fibromyalgia, arthritis, ME/CFS, or depression.

Politics (sort of on topic, but not entirely)

Since it’s political season, let’s talk politics. I’m sure what I’m about to say will infuriate both sides.

I think we should be tough on crime. ALL crime. The guys who lined their pockets while running Lehman Brothers, AIG, etc. into the ground should be doing hard time. No, not sharing cells with murderers at San Quentin, but not at some country club, either. At the other end of the economic spectrum, illegal immigrants should get a one-way ticket home, paid for by fines on their employers; don’t just dump them a mile over the border in Tijuana where they can beat the Immigration agents back to downtown San Diego, but take them back to Central or Southern Mexico (or the major airport nearest wherever they came from originally).

Doctors who cause serious injury should be sentenced under the same guidelines as any criminal who causes Great Bodily Injury: earlier this year, I worked on a case where a criminal got 25 years for rendering someone permanently disabled. Why shouldn’t my doctors serve that same amount of time for leaving me permanently disabled? Oh, I’d give them some special privileges that the shooter didn’t get – they would spend their sentence working in the prison’s sick bay instead of making little rocks from big rocks – but they’d wind up paying for their malpractice in the same way I’m paying for their malpractice: by losing their ability to earn a living and their ability to come and go as they please.

I also think that we need to be more charitable to our brothers and sisters who have fallen on hard times. When a company shuts down, such that it’s readily determinable that people did not become unemployed through anything they themselves did wrong, let’s offer them "living wage" unemployment benefits and for a longer period, say 12 months instead of 6. And if an entire industry goes under, making it harder for people to find work in their field, make it 18 months. There are not many people who will choose to collect $1500 a month ($8.66/hour) for the full 18 months when they’ve been offered a job paying $3500 a month ($20/hour) with medical/dental and other benefits.

It’s been repeatedly determined that it’s impossible to survive on minimum wage, yet some of our disabled are expected to scrape along on less than half that pittance! Again, a tiered system should be put in place: those who are permanently disabled or temporarily 100% disabled should get enough to reflect that they cannot work part-time to supplement their benefits – someone who is only partially disabled is allowed to earn about $900 a month without losing their benefits, so someone who absolutely can’t work should get that extra amount to reach income parity with the partially disabled.

I can understand the logic of avoiding potential fraud by making disability benefits less than a minimum wage paycheck, but let’s be reasonable. Make it $50 or $100 less per month, not $500 or $800 less. Someone who became disabled through no fault of their own should not be reduced to sleeping in the gutter because their disability check is less than the rent/utilities on a studio apartment. (In this area, the waiting list for subsidized housing is about 10 years.)

And, on that subject, how many disabled people could go back to work with proper treatment? Penny wise and pound foolish, some treatments are denied as "too expensive" when it’s even more expensive to keep the person on Disability benefits for years than to front the money necessary to get them back to work. For example, Ampligen, which has been shown to work for CFS, costs $20,000/year. Although other countries have approved it, the US has not. And it’s been insinuated to activists that even if it were FDA-approved, government health care programs would not pay for it because it’s too expensive. Which, in the long run, makes no sense. Pay for the first year of what patients have called a miracle cure, so that I get well enough to return to work, and I’ll earn enough to continue paying for it myself. And I’ll be paying taxes, too. Or refuse to help patients bootstrap themselves and they’ll never go back to work because after years off work, they don’t have $20,000 to pay for the first year of treatment themselves.

It’s also been determined by several of our Congresspersons who tried it that it is impossible to eat well on the amount provided by food stamps. A friend who was temporarily not working after surgery had a choice: follow the doctor-recommended diet that would get him healthy enough to return to work, and run out of food after the first week of the month, or eat the things the doctor specifically told him to avoid because they were cheap and he could stretch his food stamps to eat for the whole month.

We can make sure that our less-fortunate are able to eat a healthy diet by allowing them to spend more each month on food, which should result in spending less on medical care. If anyone is concerned about them spending their additional food stamps unwisely, then set it up like the WIC program, where only certain items are on the approved list. Give them coupons that are good only for milk/cheese (including the lactose-free varieties for those with allergies), only for fresh produce, only for lean protein.... and in the quantities indicated on the government’s food pyramid. Don’t tell people they should eat 3 ounces of lean protein, but then provide them only with enough food stamps to buy the cheapest, fattiest cuts of meat. Don’t tell them to drink 3 glasses of milk if the food stamps will only cover the cost of 1 glass a day.

Now that grocery stores have computerized cash registers, and food stamp usage is also computerized, it should be easy to conduct spot checks – occasionally ask someone to produce a specific receipt ("we see that you spent $65.11 at Safeway on September 15, please mail in that receipt or sign here to authorize us to obtain a computer printout from Safeway") and offer nutrition counseling if it’s noted that the person regularly spends most of their food stamps on unhealthful foods.

And let’s talk medical insurance. Ideally, the for-profit insurance companies would be gotten out of the picture so that insurance is available to EVERYONE, not cherry-picking the healthy and leaving the sick/disabled uninsured (or offered insurance only at premiums that far exceed their income). No more of these policies, like the one I now have, that take your money every month and quibble over paying for anything at all, but real medical insurance that covers every doctor visit, every test, every prescription. Those who can afford it would pay for it much the same as they do now, with deductions from their paychecks – employers who had been paying for the insurance would be expected to increase their employees’ paychecks to reflect the expense which is no longer on the employer but on the employee. Those with incomes below a certain level would pay on a sliding scale, say 5% of their income, whether that income is earned, pension, SSDI or self-employment, but receive the same basic policy as those who can afford to pay more.

This is the richest country in the world, why can we not provide our citizens something that is provided even in some Third World countries? Granted, the local witch doctor in the backwoods of some of those countries is no Sloan Kettering, but he’s also more medical care than many of America’s poor and disabled can currently afford, and their citizens who can make it to a hospital are cared for, not first asked "how do you plan to pay for this?" and then threatened with lawsuits and homelessness while still too sick to work in order to pay the bill.

How do we pay for this? Charity begins at home. Dip into the amounts spent on foreign aid – only when every one of our own citizens has what they need, should we feel that we have money to spend improving the quality of life in other countries.

Medicare won't pay for Medical Errors

Medicare Won't Pay for Medical Errors
Medicare will stop paying hospitals for the added costs
of treating patients who are injured in their care.

* * *

Although the "policy" will be that the patients aren't to be charged when Medicare won't pay, I suspect some doctors/hospitals will find a way to get around that and add insult to injury by suing patients to personally pay the additional bills that Medicare refused to pay.  It's already quite common to blame the patients for not getting well, so why would they not take that attitude out of the doctor's office and into the courtroom?

And what about those like me, who need lifelong medical care as a result of malpractice?  Will Medicare (or a private insurer with the same policy) only refuse to pay the particular medical group responsible, or will every doctor in the country be told he's not getting paid for treating me, if it can be related back to the malpractice committed by another medical group?

I think it's a good idea to make hospitals bear the costs of their preventable medical errors, but there are too many ways for this to come back to haunt the patients the rest of their lives, so there have to be some guidelines and safeguards put into place to protect the patient.

Doctors claimed they were unaware of information provided in writing, swore up and down that I myself told them the lies that appear in my medical records (things I know I never would say), and repeatedly found ways to put the blame on me for their malpractice.  It wasn't their fault: I "made no sense", I misunderstood, I told lies about my medical history, I didn't beat them over the head hard enough with the notion of being diagnosed by a virologist so even though that was written down by the doctor it's my fault that it didn't sink in. 

And when you show them the information in black and white, it's somehow my fault that they didn't read it before my appointment.  As I exploded to one of them, what is the point of my filling out a long information form that you sent to me if you're not going to read any of the answers on that form? 

Apparently, I was supposed to come in the morning of my appointment to read the information form to him to be sure he knew what it said, and come back several hours after the appointment to make sure that the correct information was dictated for the records.  It's not his fault that I didn't stand over him the entire day to make sure that he did his job correctly.

Tuesday, September 30, 2008

10 Things Not to Say

Top 10 things NOT to say to a chronically ill person

See the Rest Ministries/hopekeepers T-shirt with this saying on the back!

10. You can't be in that much pain
9. Stop being lazy and get a job
8. You just want attention
7. Your illness is caused by stress
6. No pain. . . no gain!
5. It's all in your head
4. If you just got out of the house...
3. You're so lucky to get to stay in bed all day.
2. Just pray harder
1. But you look so good!

Copyright, Lisa Copen, Reprint permission granted if the following is included:

Reprinted with permission of Lisa Copen, Copyright 2007, National Invisible Chronic Illness Awareness Week,

If you like it, go to their website to buy it!


I just received this from AOL:

We’re sorry to inform you that on Oct. 31, 2008, AOL® Journals will be shut down permanently. We sincerely apologize for any inconvenience this may cause.

It’s very important that you save your Journals content before the shutdown. We're working on a way to easily move your Journal to another blogging service.

I'll find somewhere to continue blogging.  After having started this here, I realized that I'd have a bigger audience on one of those other services, where more people hang out and are likely to trip over it by accident, but didn't want to have a little here and a little there, so I left it here out of sheer inertia.  Now I have no choice.

Monday, September 29, 2008

Who gets the Government handouts?

Congress has voted against a $700B bailout for bad management decisions at financial institutions.

I can’t help but look at that in a different context. That $700B would be a great help to CFS patients.

It could pay all the American CFS patients’ disability benefits for years. That would help the economy, because we’d actually have money to spend instead of buying as little as possible in order to stretch our savings.

It would provide enough money to give each of us a year of Ampligen treatment to get us back to work/taxpaying status. Again, putting a million people back to work would be a great help to the economy.

It could provide the necessary funding to do the research to find a treatment/cure/vaccine to get us back to work and prevent anyone from ever again being off work.

But, instead, the proposal calls for those who made bad decisions are to be rewarded and those of us who were innocent victims of a particularly nasty virus to be accused of fraud when we ask for a pittance from the government.

Although the law does not require you to be indigent in order to get SSDI, I’ve had judges suggest that I’m not homeless yet, therefore I don’t "need" the benefits, and won’t get them until I do come in and testify that I have lost everything and am living in the gutter. Why not apply that same standard to the management of the failing institutions? Make them sell all their houses, yachts, cars, and bail out their own institutions. Only when they have given back every cent of their ill-gotten gains and are penniless should the government step in.

I’ve been accused of somehow bringing this on myself, and therefore should not be rewarded with SSDI benefits. Why isn’t that standard applied here? They brought it on themselves with their greed, and management shouldn’t be rewarded by keeping their jobs and stock portfolios.

I’ve been accused of committing fraud in order to get my SSDI benefits. Where’s the matching accusation of fraud against these people? People were approved for mortgages without regard for whether they could ever pay them off, and now, as granny would say, the chickens have come home to roost.

I bought only as much house as I could afford (actually, being a responsible sort, I bought a lot less house than I could afford so that I could put a much larger percentage down); no one is concerned about helping me out or rewarding me for my responsible actions. No, everyone’s concern is for the greedy people who could have afforded this house, but instead built a (pun intended) house of cards in order to leverage their way into something three or four or five times the size, and are now being foreclosed on because their eyes were bigger than their stomachs – or their wallets – but they want to keep a house that they still can’t afford to pay for.

I have more legal right to my SSDI benefits than they have to their house (on which many have barely been paying the interest, no payment toward the principal), but it’s their plight that gets everyone up in arms, while a million CFS patients having to fight the system for a monthly pittance is completely overlooked.

There’s an old fable about the ant and the grasshopper. The ant works hard and gathers food for himself, so he’s snug in a house with plenty to eat when winter comes. The grasshopper plays all summer, then finds himself out in the cold and starving.  In Aesop’s day, the grasshopper was expected to take responsibility for his bad decisions and pay the consequences. Nowadays, the ant is supposed to give the grasshopper half of his food, even if that means the ant doesn’t have enough for himself, because there are no consequences for bad decisions.

Apparently, these days the only people who have to pay consequences are the innocent victims of viruses and incompetent doctoring, who are accused of being responsible for their health problems and told they should be able to work if they just stopped thinking bad thoughts. While those who really are responsible for their own bad situations are entitled to government bailouts, no questions asked.

People have been advising me for 8 years that I could get my SSDI benefits in a jiffy with one simple little lie: just say that you’re "depressed and suicidal". There’s no way of proving that, it’s based on your word alone. Yet, a million CFSpatients are denied benefits on the false claim that "the only evidence is your word, and that’s not enough". I have abnormal blood tests, other patients have abnormal brain scans, but that evidence is not considered.  Many of us did everything right (a fair number of CFS patients were athletes who ate properly and exercised daily) and got sick anyway.  But we're blamed for bringing it on ourselves while those who truly did bring misfortune on themselves get bailouts.

And then people wonder why I get offended that there’s government money for everyone and everything except easing the suffering of a million patients? 

Sunday, September 28, 2008


Source: Monthly Journal of the Association of Physicians (QJM)
Date:   September 19, 2008

Postural orthostatic tachycardia syndrome is an under-recognized condition in
chronic fatigue syndrome
A. Hoad(1), G. Spickett(1), J. Elliott(2) and J. Newton(3,*)
1 Northern CFS/ME Clinical Network, Equinox House, Silver Fox Way, Cobalt
  Business Park, Newcastle upon Tyne,
2 ME NorthEast, Bullion Hall, County Durham, and
3 Falls and Syncope Service, Institute of Cellular Medicine, Newcastle
  University, Newcastle, UK
* Address correspondence to Prof. J. Newton, Professor of Ageing and Medicine,
  Falls and Syncope Service, Institute of Cellular Medicine, Newcastle
  University, Newcastle NE1 4LP. Email:

Received 1 July 2008 and in revised form 27 August 2008


It has been suggested that postural orthostatic tachycardia syndrome (POTS)
be considered in the differential diagnosis of those with chronic fatigue
syndrome/myalgic encephalomyelitis (CFS/ME). Currently, measurement of
haemodynamic response to standing is not recommended in the UK NICE CFS/ME

To determine prevalence of POTS in patients with CFS/ME.

Observational cohort study.

Fifty-nine patients with CFS/ME (Fukuda criteria) and 52 age- and sex-matched
controls underwent formal autonomic assessment in the cardiovascular
laboratory with continuous heart rate and beat-to-beat blood pressure
measurement (Task Force, CNSystems, Graz Austria). Haemodynamic responses to
standing over 2 min were measured. POTS was defined as symptoms of
orthostatic intolerance associated with an increase in heart rate from the
supine to upright position of >30 beats per minute or to a heart rate of >120
beats per minute on standing.

Results: Maximum heart rate on standing was
significantly higher in the CFS/ME group
compared with controls (106 p/m 20
vs. 98 p/m 13; P=0.02). Of the CFS/ME group, 27% (16/59) had POTS compared
with 9% (5) in the control population (P=0.006). This difference was
predominantly related to the increased proportion of those in the CFS/ME
group whose heart rate increased to >120 beats per minute on standing
(P=0.0002). Increasing fatigue was associated with increase in heart rate
(P=0.04; r^2=0.1).

POTS is a frequent finding in patients with CFS/ME. We suggest that clinical evaluation of patients with CFS/ME should include response to standing.
Studies are needed to determine the optimum intervention strategy to manage
POTS in those with CFS/ME.


Epidemiological studies suggest that in the United Kingdom 0.2-2% of the
population is affected by chronic fatigue syndrome/myalgic encephalomyelitis
(CFS/ME) that accounts for 1% of all primary care consultations.1 CFS/ME
affects all ages and can profoundly influence a sufferer's ability to
function on a daily basis, work or attend school. Despite its impact on the
population, the cause of CFS/ME remains unknown and there are no effective
pharmacological treatments.

Studies show that fatigue is experienced by almost 50% of those with postural
orthostatic tachycardia syndrome (POTS)2 and it has been suggested that the
presence of POTS should be considered in the differential diagnosis of all
patients diagnosed with CFS/ME.3,4 However, evaluation for POTS is not
considered a routine part of the clinical evaluation of those with CFS/ME and
the recently published UK NICE CFS/ME guidelines do not recommend measurement
of haemodynamic responses to standing in the assessment of those diagnosed
with CFS/ME.5

We therefore examined the prevalence of POTS in a cohort of those with
CFS/ME. To do this, responses to standing were examined in a large series of
subjects with CFS/ME compared with controls.



Subjects with CFS/ME (Fukuda Criteria6) were identified via the patient
support group 'ME North East'. Subjects had been diagnosed with CFS/ME in a
specialist CFS/ME service within 2 years of assessment in the autonomic
laboratory. Controls were recruited via notices placed within the hospital.
Both patients and controls were excluded if taking any medication that could
influence assessment of haemodynamics (e.g. beta-blockers, calcium
antagonists, anti-depressants). Subjects were excluded if not in sinus
rhythm, unable to stand or unable to attend the autonomic laboratory for
assessment. The study was reviewed and approved by the Newcastle and North
Tyneside Local Research Ethics Committee. All patients and controls provided
written informed consent.

Symptom assessment tools

Subjects and controls completed on the day of assessment, a measure of
fatigue impact [Fatigue Impact Scale (FIS)]. The FIS is a 40-item
symptom-specific profile measure of health-related quality of life, commonly
used in medical conditions in which fatigue is a prominent symptom. The scale
allows patients to rate each item on a scale of 0-4, with 0 representing no
problem and 4 representing an extreme problem. Individual scores are summed
to provide a total score with higher scores indicating worse fatigue. This
tool has been validated for self-completion (i.e. assesses a patient's
perceived level and impact of fatigue) in both CFS/ME and normal

Assessment of haemodynamic responses to standing

Subjects underwent formal autonomic assessment in the cardiovascular
laboratory. All subjects refrained from smoking and caffeine ingestion on the
day of investigation and ate a light breakfast only. All investigations were
performed at the same time of day, and took place in a warm, quiet room. All
cardiovascular assessments were carried out with continuous heart rate and
beat-to-beat blood pressure measurement (Task Force, CNSystems). Heart rate
and blood pressure responses to standing over 2 min were measured.9 Data were
digitized and stored for offline analysis by an investigator blinded to the
fatigue status and whether data was from patients or controls. Baseline
measurements were taken as an average for 20 beats in supine position
immediately prior to standing. Orthostatic heart rate change was the change
in mean heart rate from baseline on standing. The absolute maximum heart rate
on standing was also recorded.

POTS was diagnosed using recognized diagnostic criteria10 and was defined as
symptoms of orthostatic intolerance associated with an increase in heart rate
from the supine to upright position of >30 beats per minute (beat to beat) or
to a heart rate of >120 beats per minute on immediatestanding or during the
2 min of standing.

Statistical analysis

All variables were parametric and therefore comparisons between groups and
correlations were therefore made using the appropriate statistical tests. For
continuous variables, comparisons were made using un-paired t-tests, whilst
for categorical data comparisons were made using Fisher's exact test. Results
are presented throughout as mean p/m SD.



Sixty-three subjects with CFS/ME were identified via the patient support
group 'ME North East'. One patient was found not to be in sinus rhythm, two
patients were unable to stand without support, and one subject was too unwell
to attend the autonomic laboratory for assessment. The study cohort therefore
comprised 59 patients with CFS/ME (Fukuda criteria). Mean age of the CFS/ME
group was 47 p/m 12 years with 41 (69%) females. This group was compared with
a group of 52 controls matched group-wise for age and sex [mean age 50 p/m 13
years; P=0.3; 34 (66%) females]. Predictably the CFS/ME group were
significantly more fatigued compared with the control population (assessed
using the FIS; 96 p/m 28 vs. 13 p/m 21, P<0.00001).

Haemodynamic responses to standing in CFS/ME compared with controls

Although mean blood pressure responses to standing were lower in those with
CFS/ME compared with controls none of these parameters reached statistical
significance (Table 1).

When considering heart rate responses to standing, despite a baseline heart
rate that was not significantly different between the CFS/ME group and
controls (84 p/m 17 vs. 80 p/m 14; P=0.2) the maximum heart rate attained
on standing was however significantly higher in the CFS/ME group compared
with controls (106 p/m 20 vs. 98 p/m 13; P=0.02) (Figure 1).

Prevalence of POTS in the CFS/ME group compared with controls

When the diagnostic criteria for POTS were applied to both the CFS/ME and
control groups, 27% (16/59) of the CFS/ME group were found to have POTS,
which was significantly higher than the 9% (5) found in the control
population (Figure 2). This difference was predominantly related to the
increased proportion of those in the CFS/ME group whose heart rate increased
to above 120 beats per minute on standing.

There were no significant differences in fatigue severity, age or sex between
those found to have POTS compared with those CFS/ME patients who did not have
POTS (data not shown).

Increasing fatigue was associated with the increase in heart rate 30 s after
standing (Figure 3).


This study describes for the first time, the prevalence of POTS in a cohort
of patients with the clinical diagnosis of CFS/ME. POTS is a frequent finding
in our patients with CFS/ME and we would therefore suggest that the clinical
evaluation of patients presenting with CFS/ME should include heart rate
responses to standing. The prevalence of POTS may in fact be even higher in
this patient group than that reported here, as we limited our observations of
haemodynamics to 2 min of standing. Studies are needed in order to determine
whether the prevalence may be even higher if monitoring is continued for
longer periods.

Symptoms on standing are a frequently described symptom in those with fatigue
in general11,12 and CFS/ME in particular12­21 and the physiological
mechanisms that lead to these symptoms are poorly understood. The
pathophysiology of POTS remains unclear, and includes autonomic
abnormalities, hypovolaemia or low blood volume. Furthermore, whether
management of POTS by normalization of heart rate, leads to improvements in
fatigue and the other symptoms of CFS/ME requires further study. We would
suggest, however, that our finding that higher levels of perceived fatigue
were associated with the degree to which heart rate increases on standing,
would imply that this offers potential opportunities for intervention. It is
currently unclear whether POTS is a separate clinical entity distinct from
CFS/ME or whether POTS is a particular subset of CFS/ME where a specific
group of symptoms are particularly marked. Longitudinal clinical studies are
needed in order to define this further. In the meantime, optimizing the
management of those with POTS is critical. The largest series of patients in
the literature confirm a significant symptom burden in those with POTS
including weakness, muscle aches and pains.2 In view of these findings and
without evidence to the contrary, we would strongly suggest that current
medication regimes for the management of POTS are simply symptomatic and need
to be combined with the multifaceted effective interventions performed within
the context of the CFS/ME clinical networks, thus incorporating into POTS
management the other effective components of a fatigue management programme.5
Studies are proposed within our group to compare the efficacy in POTS
patients of medication alone compared with medication with conventional
CFS/ME management.

Interestingly, our CFS/ME with POTS group differed from the demographic group
reported in the largest series of POTS patients to date. In the Mayo series,2
86.8% were females whilst in our group this was lower at 69%, and our group
did include 31% who were over the age of 50 years (mean age in the Mayo
series was 30 years). In the Mayo series, only 48% of those with POTS
experienced fatigue and a wide range of other symptoms, so it may be that
there are a variety of different POTS phenotypes, one (or more) or which
manifest as the symptom of fatigue. An alternative explanation for the
demographic differences between the two groups is related to referral bias.

Studies in adolescents suggest that POTS physiology underlies orthostatic
intolerance in the majority of those with CFS.3 Studies suggest that POTS is
accompanied with a range of autonomic nervous system abnormalities including
vagal withdrawal and enhanced sympathetic modulation, associated with
findings consistent with pooling in the lower limbs, similar
pathophysiological mechanisms as those hypothesized in a proportion of those
with the diagnosis of CFS/ME.12-14

Our clinical impression is that treatment to reduce the heart rate in POTS is
associated with improvements in fatigue.22 This needs to be formally
evaluated in randomized controlled trials in patients with CFS with a POTS

We would suggest that the diagnosis of POTS (a potentially treatable
condition) may be being missed in those attending services with CFS.
suggest that on follow-up, 80% of those with POTS will improve, 60% are
functionally normal and 90% were able to return to work.23,24 It is therefore
important that this diagnosis is considered in all patients presenting with
fatigue and that appropriate investigations performed. We would suggest that
at the very minimum this includes haemodynamic assessment in response to
standing of patients attending CFS/ME clinical services.


We are grateful to ME Northeast for their participation.


ME Research UK; the Local CFS/ME Clinical Network.
Conflict of interest: None declared.

Figure Captions

Figure 1. Maximum heart rate (HR) attained on standing was significantly
          higher in the CFS/ME group compared with controls. Results are
          presented as mean p/m SD.
Figure 2. The proportion of the CFS/ME group (black bars) compared with
          controls (clear bars) who were found to have POTS.
Figure 3. Increasing fatigue (FIS) was associated with the increase in
          heart rate (HR) 30s after standing, in those with CFS/ME.


Table 1 Systolic blood pressure (SBP, mmHg) responses in the CFS/ME
        group compared with matched controls
                       CFS/ME           Controls           P
Baseline SBP           130 p/m 18       131 p/m 21         0.7
Nadir SBP              112 p/m 22       114 p/m 24         0.7
Change in SBP           18 p/m 11        17 p/m 11         0.8


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(c) 2008 Oxford University Press
(c) 2008 Association of Physicians
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See also the Cheney on Cardiology article on