Intimacy and Love in Sickness and in Health

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Last Updated: 06 December 2015 06 December 2015

After carefully arranging an assortment of pillows, finding comfortable positions for one's head, shoulders and back, and finally being able to let one's body melt into the bed, sexual activity is likely the last thing to appeal to someone with ME/CFS or FM. For many, sleep will win "hands down" over sex.

Chronic illness disrupts most daily functions and becomes an intrusive bed partner. The pain, fatigue/exhaustion and multiple other problems that are part of ME/CFS or FM tend to wear a person out. Medications used to manage these problems can be very sedating and some of these may also decrease libido.

Other factors that may squelch that loving feeling are worries about feeling more pain or triggering other symptoms, anxieties about performance or response, or finding that sex takes too much energy. Therefore, it is easy to understand the physical and emotional ramifications of these illnesses on intimacy and relationships.

Sending the other spouse or partner off with yet another "rain check" will not be a healthy resolution to what already might be a fairly sensitive issue. Much like the person who is ill and needs to have his or her feelings be taken into consideration, it is only reasonable and fair to extend the same to the other spouse or partner who might feel rejected and frustrated. But things don't necessarily have to stay this way.

There are things that individuals can do to overcome some of these obstacles. Dr. Mark J. Pellegrino, a physician who specializes in FM but is also someone with that illness, wrote a featured article, Sex and Intimacy in Fibromyalgia (but clearly this can easily apply to ME/CFS), for the WebMD Fibromyalgia Community earlier this year. He encourages individuals to try and redirect their attention to the positive aspects of sexual intimacy.

Some of the many benefits of sex, according to Dr. Pellegrino, is how it "increases our body's endorphins; it improves blood flow, removes toxins from cells, and boosts our immune system; it results in stretching and then relaxation of our muscles; it reduces stress; and it re-connects us emotionally and intimately." Of course, the situation for couples will not change simply by changing their focus. This will be something both parties will need to work towards, with a sincere interest to restore or improve this aspect of their relationship.

Communication plays a key and vital role. Dr. Pellegrino urges couples to talk openly and caringly with each other about their fears and desires, especially how the illness has interfered with intimacy. During this process, it is also important to pinpoint specific problems which could be improved by medical treatment.

Dr. Pellegrino wants to discourage people from blaming it all on the "fibro" (or ME/CFS) and thinking there is nothing they can do about it. Instead, he advises that these problems be reviewed with the doctor, for it is possible that a different medication could be prescribed with less effect on one's libido, or to have something be prescribed for muscle spasms or pain, and to review if medications or products that enhance sexual response might be suitable in some cases.

Other suggestions are to figure out the best time to get together (i.e., nighttime may not necessarily be the right time for individuals who are struggling with pain and sleep disorders), allow plenty of time to lead into sexual activity and to try different positions which could help to reduce pressure on painful areas.

He also encourages couples to explore different ways to be comfortable with each other as well as other forms of sexual activity. Dr. Pellegrino suggests that individuals consider professional counseling if there appears to be a deeper problem, below the surface, which continues to interfere with sexual intimacy or does not respond to modifications or medical treatment.

Aside from the medical perspective on sex and intimacy, many couples, especially those who have been together for a long time, regard another type/level of intimacy to be just as, if not more, fulfilling and important as part of the emotional closeness that develops in deeply committed relationships.

Having someone you trust and with whom you can talk "heart to heart", do things that are interesting or fun, or provide comfort and contentment through caring words or gestures are ways to cultivate togetherness. For many couples, though understandably not for all, the passion and lust (from youth and perhaps, a more carefree time) will subside. What keeps a relationship thriving will be something more profound and lasting.

The American Association for Retired Persons (AARP) magazine published an interesting article, "Love American Style", in their January/February 2010 issue with results from a poll they had conducted on love. Though their survey focused a lot on the differences between Americans and the French when it came to sex and love, it also brought to light the humanistic/psychological aspects of love.

A much higher percentage of Americans, 77% compared to 35% of the French, stated that "true love can exist without a radiant sex life". Some participants remarked in how they value the stability in a long-term relationship.

Helen Fisher, Ph.D, a biological anthropologist at Rutgers University in New Jersey and an author of numerous articles and books, has devoted much of her career to studying love and attraction and what leads to successful lifelong partnerships. Her research includes conducting brain scans and analyzing brain mechanisms involved in love. She discovered that individuals, whether they were 18 or 80, had similar brain chemical activity in response to love. Dr. Fisher concluded the article with an important take-away message, "The body gets older, but the basic emotion-the need to be in love—remains the same."

Not everyone in a relationship is in love. If you are both in a relationship and in love, try reaffirming that love by creating your own little rituals.

Disability Discussion--Barbara Comerford, ESQ.

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Last Updated: 20 November 2015 20 November 2015

Barbara Comerford, ESQ, was one of the speakers at the New Jersey CFIDS Association conference held on October 17, 2010. She has a practice specializing in disability law in the jurisdiction of New York and New Jersey.

Through her work, Ms. Comerford has become a specialist in ME/CFS disability and spoke to the issues ME/CFS patients need to know.

Previously, she has held a post as a board member of the NJ CFIDS Association, The CFIDS Association of America (CAA) and The American Association of Chronic Fatigue Syndrome (AACFS) before it became the International Association of Chronic Fatigue Syndrome (IACFS), and helped work on the physician’s manual that the NJ CFIDS Association published.

Although many patient organizations and some physicians refer to this illness as CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome), the government’s official name is still Chronic Fatigue Syndrome (CFS) and that is the name Social Security Administration (SSA) uses. Ms. Comerford concentrated her speech on the high points regarding Social Security Disability Insurance (SSDI) and Long-term Disability (LTD).

Social Security disability process

Ms. Comerford gave some background on why the SSA ruling SSR 99-2p was issued on April 10, 1999. (N.B. This ruling has been superceded by SSR 14-1p "Titles II and XVI: Social Security Rulings: Evaluating Claims Involving Chronic Fatigue Syndrome" of April 3, 2014. See the article "Major 2014 Social Security Ruling Establishes New Standards for Documenting ME/CFS Social Security Disability Claims/Reviews"  for more detail.)

According to the SSA, the purpose of the 1999 ruling was to “restate and clarify the policies of the Social Security Administration for developing and evaluating title II and title XVI claims for disability on the basis of Chronic Fatigue Syndrome (CFS), also frequently known as Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS).”

She explained that the CFIDS Association of America (CAA) had requested guidelines from the SSA for adjudicating CFS cases when it was learned that an Administrative Law Judge (ALJ) had written a memorandum to the chief ALJ basically stating that the CFS cases could never win because there was no objective medical basis for the diagnosis.

At the time, the SSA Commissioner, Susan Daniels, wrote a response basically saying just because the science has not caught up with the illness does not mean these people are not disabled and that the SSA needs to look at these cases slightly differently. SSR 99-2p is the guideline the SSA created for evaluating CFS cases. Every disability case is reviewed according to a 5-step process regardless of illness type. Ms. Comerford has written many articles on this process. To learn more, go to her website at www. tristatedisabilitylaw.com where her articles are posted.

The five things evaluated for every claimant under the Sequential Evaluation Process require:

1. That you not be engaged in substantial gainful activity;
2. That the medical impairment be documented with medical signs and lab findings;
3. That it be determined if an applicant’s illness meets or equals an “Impairment Listing”; Ms Comerford explained that this listing has 14 bodily systems and CFS is not among any of them, causing CFS cases to be evaluated in subsequent steps;
4. That you cannot perform your past work;
5. That the SSA has to prove there are no jobs that the claimant can do at any level, in light of his or her age, education, work experience and the limitations imposed by CFS.

Ms. Comerford explained why the SSA looks at the above list and what they are looking at with regards to CFS patients. Under SSR 99-2p, the SSA is looking at:

• Can the patient satisfy the Fukuda 1994 Definition of CFS that the Centers for Disease Control & Prevention (CDC) uses?
• Does the patient have medical evidence in lab work that something is wrong?  Some but not all examples are: autonomic dysfunction; postural tachycardia; neuropsychological testing which can show the slowed cognitive function or slowed processing of the brain; a positive tilt table test; Epstein Barr Virus (EBV) activation; Human Herpes Virus 6 (HHV6) activation, Fibromyalgia tender point exam.
• Is there clinical longitudinal documentation by the physician that shows there is an impairment in functioning? This is CRUCIAL and the problem is most doctors DO NOT keep these types of records.

She also pointed out that there are two things that are important for the patient to have:

• a physician willing to do the NECESSARY paperwork required for SSDI (most won’t);
• a physician who BELIEVES in the patient and the illness and is willing to fight for the patient.

Ms. Comerford said that as expensive as it is, and most likely not covered by insurance, neuropsychological testing is one of the best ways to show slow brain processing and the cognitive impairment associated with CFS before an Administrative Law Judge (ALJ).

It is important for the patient to have a good lawyer who not only understands this illness but who is also able to frame the case in a manner the ALJ can understand. For instance, the lawyer may be able to make the case that decreased brain and cognitive function can impact the claimant’s ability on the job. This then would help document a disability. Or a patient who has Orthostatic Hypotension and can’t sit or stand up for more than a few minutes at a time would also be considered as having a disability.

Private long-term disability insurance process

Ms. Comerford then explained the process that occurs when a patient files for Long-term Disability (LTD) by virtue of his or her employment. This is a much more difficult standard if the plan under which these claims are paid lets the fiduciaries (the companies) who make the decision on a claim do so “in their discretion.”

She stated that this language “in their discretion” is almost always in a company’s contract and what it means is that the decision of disability is up to the insurance companies. And, in many cases they will turn you down.

If the case goes to court, and many do, the insurance company’s lawyer can present pictures of the disabled patient out mowing the lawn, carrying groceries etc. because the insurance investigators are out there, and are known, at times, to investigate people using a variety of methods, including long lens cameras, talking to neighbors, etc.

Ms. Comerford knows that on a good day, patients have a tendency to do all that is possible because they do not know when another good day will come around. Insurance companies fighting disability use every trick they legally can. Having a disability lawyer who does not understand how this illness works and how to fight the insurance companies is very challenging for the patient. Having a lawyer who can explain the illness and the unsustainability of it goes a long way.

Ms. Comerford also said conflict of interest still matters to the courts. In some cases where an insurance company under ERISA both pays the proceeds (i.e. benefits) and determines eligibility for benefits there can be an inherent conflict of interest. Then the patient’s lawyer must show the court that the process in which the case was evaluated was very, very faulty to the point of abuse of “their [the insurance company’s] discretion.”

One way that this can be shown is to present enough medical documentation along with strong evidence that those medical findings limit the patient’s ability to function.

Then, the court also evaluates whether the insurance company based its decision on their nurse’s paper review; the opinion of their (the insurance company’s) doctor who has no CFS background; as opposed to the recommendations and opinions by a physician who knows this illness. The courts will consider this issue because CFS and FM require a tremendous amount of specialization.

Another situation the court will look at is if the insurance company is not paying any attention to a favorable SSA ruling for the patient. Most insurance companies require the patient to file for SSDI because their financial exposure is less if they are paying the claim. Once the person gets awarded SSDI, the insurance company may claim any “overpayment” they have made that overlaps with retroactive Social Security benefits.

If the patient ever has to go to Court to appeal an LTD rejection, his or her lawyer could argue that the federal government—the Social Security Administration—has determined the individual is disabled.  Courts will also look at whether the insurance company took into account the unpredictability of this illness, which Ms. Comerford stated as one of the worst and most disabling symptoms of this disease, as well as the unsustainability of activity and post-exertional malaise.

The unpredictability and unsustainability are hallmarks of this illness, and as she said “What employer wants an employee that cannot predict that they can show up for work from one day to the next?” If the insurance company ignores the unsustainability and has a video showing a patient lifting a twenty-pound bag, chances are tomorrow the patient will be in bed all day. It is that unsustainability that is important for the court to understand.

What the patient can do

Ms. Comerford stressed that it was a good idea for the patient to keep a daily log of the medications he or she takes and the activities he or she engages in. It may well be the best documentation the patient has. It could show that upon short activities, such as taking a shower, the patient has to get back into bed for an hour or so to recover from that activity.

Unfortunately, it is not uncommon for a patient to be unable to keep such logs because it becomes just one more thing that “has to be done.” However, it is an important thing to do. As good as a patient may physically look, the log shows the instability of functionality for the patient.

The biggest take away from this speaker was the unsustainability of activity for CFS patients and how that helps with attaining disability status.

If the patient and doctor can show (through doctor’s notes or patient logs) that the patient can not sustain normal activity, and has some medical testing showing abnormalities, it helps the CFS patient gain disability status. Ms. Comerford closed by saying that it all begins and ends with the medical documentation.

More resources

Ms. Comerford's website has many other articles on disability law topics.

For a detailed information of all aspects of disability as it relates to ME/CFS and FM, including our Disability Handbook, please see our section on Disability.

For an update on the Social Security requirements for ME/CFS disability status as of April 3, 2014, see the article "Major 2014 Social Security Ruling Establishes New Standards for documenting ME/CFS Social Security Disability Claims/Reviews." 

Diagnosis, Treatment and Cure Unknown

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Last Updated: 16 November 2015 16 November 2015

by Rick Laferriere

(Permission to repost was granted by Rick Laferriere, co-moderator of the LymeInfo yahoo group for Rhode Island. Additional information about this group is  included at the end of this review.)

Pamela Weintraub, Cure Unknown: Inside the Lyme Disease Epidemic (New York, NY: St. Martin’s Press, 2008), 432 pp. ISBN: 0312378122.

When I received my copy of Pamela Weintraub’s new book, Cure Unknown: Inside the Lyme Disease Epidemic, I was eager to read it and found it difficult to put down. However, it was more than my own personal experience with tick-borne illness that piqued my interest.

I longed to read how Pamela Weintraub, a competent science journalist who had deeply personal experiences with Lyme disease, would tell the complex story of Lyme disease. To me, this story is one that has been crying to be told and Pamela Weintraub is perfectly poised to tell it.

At first, I was reminded of Polly Murray and her superb 1996 book about the early years of Lyme disease, The Widening Circle: A Lyme Disease Pioneer Tells Her Story (St. Martin’s Press). Weintraub picks up the trail with stories of herself and other mothers who are struggling to find explanations for the unusual medical problems in their families that baffled every doctor they met. Today, we know much more about the pathogens transmitted by the bite of a tiny deer tick than we did over thirty years ago. Sadly, we are still reading about mothers in dogged pursuit of the same answers.

The horrific treatment by medical professionals toward sick children described in Cure Unknown is cruel, incomprehensible and devastating. The indiscriminate determination of who actually has Lyme disease and who doesn’t is just one example.

A patient in Weintraub's book goes to several doctors who repeatedly determine that he definitely does not have Lyme disease. A few years later a test shows him to be unequivocally positive. Nevertheless, when the patient fails to improve after a few months of antibiotic treatment, he is deemed to no longer have Lyme disease, is refused further treatment and is told his problem must be psychiatric.

Real doctors behave this way and they do not need a rational explanation to justify their actions. This is Lyme disease and if you ever thought it was the “disease du jour” you are in for a rude awakening.

What sets Cure Unknown apart, and makes it so compelling to read, is how patient histories are told in the context of an unfolding and fractious divide within the medical and scientific research communities. Readers will learn about patients who are largely ignored by the mainstream medical community with a disdain, derision and passion rarely seen with other illnesses.

Weintraub’s deft use of wry humor allowed for such distasteful behavior to be a bit easier to swallow. Her exhaustive research, interviews, and knack for explaining complex scientific information combined to keep me engaged and eager to finish the book. Seasoned veterans of Lyme battles of their own will also find bits and pieces here that they will learn about for the first time.

I had to wonder, in the end, how many Lyme patients experience the same tragic challenges as those profiled in this book. We may never know the answer. That’s because there is still no gold-standard test to distinguish patients with Lyme disease from those without Lyme disease. This kind of research, oddly, has not entirely been the focus of the research community since Lyme was first discovered over thirty years ago and Weintraub illuminates this conundrum quite well.

Her book should alter the landscape upon which the tiny deer tick thrives and the Lyme patient wanders in a solitary search for answers.

Editor’s note: Rick Laferriere has been a long-standing advocate for Lyme Disease. Rick serves as co-moderator of a yahoo group, LymeInfo, with the same name as the main organization. This yahoo group is an email list that was created to supplement the main website LymeInfo.Net, and it has served the online Lyme disease community since 1997. He describes this yahoo group as a one-way dissemination of periodic announcements of the latest news coverage on Lyme Disease, including scientific items, upcoming events and important action items, but without the conversation found on email support and discussion lists.

New Provisional Criteria for Clinical Diagnosis of Fibromyalgia

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Last Updated: 23 January 2016 23 January 2016

In May 2010, the American College of Rheumatology (ACR) released new criteria for the clinical diagnosis of Fibromyalgia (FM). The proposed criteria are provisional and will still need to be intermittently updated.  Read a summary.