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Until We Have a Cure: What CFS Patients Want Well People to Know

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This article, sharing the results of a deeply personal CFS/FM patient survey, is reproduced with kind permission of the Massachusetts CFIDS/ME & FM Association (www.masscfids.org). ©2012 All Rights Reserved. It first appeared in the Association’s free Dec 2012 e-newsletter (to see much more and become a subscriber, click here).

Until We Have a Cure: What CFS Patients Want Well People to KnowCoping and Hoping
Priscilla Larson

In response to a questionnaire, 30 persons with the Chronic Fatigue and Immune Dysfunction Syndrome / Myalgic Encephalopathy (CFIDS/ME) or Fibromyalgia (FM) or both, shared their pain and passion, their coping skills and their hope for the future as they wait for a cure.

PWCs (Persons with Chronic Fatigue Syndrome) suffer with an extremely long list of potential symptoms, overwhelming fatigue being the bottom line. Because the symptoms vary hour to hour, patients are often misunderstood, thought to be hypochondriacs. Doctors don’t like to take on patients who never get well; friends tire of someone who is always sick.

Because PWCs usually look well, people frequently comment on that, giving the patient the feeling that, as several participants reported, “I feel invalidated.”

When Asked “What They Would Like Well People to Know”…
…the participants in the survey expressed their need to be believed, understood, loved, and assisted in the following ways:

• “The thought of being forgotten is almost more painful than the illness itself.

• “It means a lot when you include us in your social events. Even when we can’t come, it takes the sting out of being home alone because we were included.”

• Some pleaded for patience. “Please be patient with us – there’s bound to be emotional upheavals.”

• Regarding assistance, the general tone was “Treat us like you would anyone with cancer or lupus or any other long term illness.”

• “Just ask me if I need help and how much. I hate to ask for fear of rejection.”

• The longing to be understood came out in answers like, “Sometimes I need the freedom to express honestly what I’m struggling with, without judgment and pat answers.” And, “I wish well people understood the difference between CFIDS and temporary fatigue due to over work. So many compare their tiredness to our fatigue and think it is the same.”

In responding to the following questions, the participants have shared their creative coping skills, their heartfelt longings, and insights and suggestions on how best caring friends and family can help.

List the Most Helpful Ways that Well Persons Have Related to You by What They Said or Did:

• “A willingness to listen.”

• “Showing interest in learning about my illness.”

• “By becoming involved in the cause.”

• “Friends who can accept ‘maybe’ commitments.”

• “When friends adjust their plans so I can participate.”

• “People who observe, ‘I can see that this isn’t one of your better days. Let’s do something together on a good day for you.'”

• “Brought in a meal.”

• “Telephone call that sometimes includes a prayer.”

• “Believing me unconditionally.”

• Regarding “maybe” commitments: A positive example is in the way a hostess graciously extended a New Year’s Eve party invitation. She said, “Come when you can, leave when you must, and know that if you can’t come at all we’ll miss you but we’ll understand and we’ll try another time.”

What Are The Most Hurtful Ways Persons Have Related To You?

• “Comparing their tiredness to CFIDS, showing that they really don’t get it.”

• “Ignoring what I said about hurting and then going right into long descriptions of their temporary pain.”

• “Saying, ‘You’re not sick, you’re lazy. Snap out of it!’ ”

• “Are you sick again?”

• “The attitude that since I’m disabled I’m worthless. My accrued knowledge doesn’t count.”

• “Come on! You can go! Think positively!”

• “I wish I could lie around all day like you and watch TV.”

• “We need an able-bodied person here.”

• “You can’t do anything!”

• “You should be ashamed of yourself parking in that handicap space. You don’t look handicapped to me.”

Regarding hurtful comments: Belittling the illness by the uninformed is hard on patients. Not being taken seriously can lead to several reactive attitudes that hurt. “We need compassion, not condemnation,” one PWC wrote.

Also, regarding the abuse some take when parking in the handicap spaces even when they have a registration to do so, the public needs to realize that all handicaps don’t show. Think of persons who have heart ailments and breathing difficulties when walking. A PWC may be spending her entire energy quotient for the day to go into one store to do an errand.

What Is the Most Difficult Aspect of Being Chronically Ill?

• “Not knowing if I’ll be able to participate in an upcoming activity.”

• “Never ending pain.”

• “Unpredictability of a good day.”

• “Being misunderstood.”

• “Not having the physical capacity to follow through on my ideas.”

• “Not having a romantic relationship.”

• “Friends who never ask if I need help.”

• “The financial ruin. Working brings on severe fatigue.”

• “Not being able to work or to do something useful.”

• “So many losses: relationships, social life, meaningful employment, my home, income.”

• “Wondering if I’ll ever find a partner who will understand and support me.”

In these responses we see the pangs of loneliness and the fear of further losses in relationships and property.

What Would You Like Well Persons To Know?

• “Realize that we have feelings!”

• “We want well people to know that we want to socialize but sometimes we can’t even handle a phone call. Please don’t take it personally but call again. If we don’t return your call right away it’s not because we don’t want to but because we can’t think clearly right then.”

• “Give us credit for what we do.”

• “Understand that our symptoms vary from hour to hour as different systems in our bodies become affected. What is happening today might he superceded by other symptoms tomorrow”

• “When our memory shuts down it doesn’t mean that what you said isn’t important to us, our brains just didn’t register at that moment.”

• “I’m still the same person – I just don’t have the abilities I used to have.”

• “I wish that well persons understood the difference between CFIDS and temporary fatigue due to overwork. So many compare their tiredness to our fatigue and think it is the same.”

• “When you see us out on an errand and say, ‘You look wonderful, you must be all better now,’ we feel like you don’t realize that we may have just used up our entire energy quotient for the day and will probably drop into bed when we get home.”

• “I’m able to do a lot if I can do it at my own pace. Others can’t do that, so just ask.”

• “It means a lot when you include us in your social events and you don’t get offended if we can’t do it all.”

Because PWCs usually look so well, people often comment on that as if to reassure the patient. Patients sometimes take it to mean that you don’t believe that they are sick. Better to say something like, “It must be hard for you to feel so lousy when you look so well.” That shows real sensitivity.

While a few participants in the survey have become comfortable asking for help, most find it difficult and appreciate specific offers.

Like most people, chronically ill persons would rather be the server than the servee. They would rather be involved in meaningful work than lying at home alone.

What Is Your Best Coping Tip To Pass On To Others?

• “Respect yourself enough to explore what affects you beneficially as well as adversely. Watch yourself. Analyze your needs.”

• “Don’t stop doing the things you love but do them on a different level. Have a windowsill garden instead of a yard one, listen to music instead of performing.”

• “Read stories about overcomers and be inspired.”

• “Develop your faith and put it to work.”

• “Keep a list of things you like to do and do them according to your energy level.”

• “Do what gives you satisfaction and pleasure.”

• “Phone someone who is also suffering and offer consolation and a listening ear.”

• “Never feel guilty about your ability level at any time.”

• “Find something to laugh about.” 

• “Stay in touch with a support group.”

• “Learn all you can about your illness; experiment with what you learn.”

• “Look for alternative treatments.”

• “Understand that you have a limited amount of energy; use it well.

PWCs who cope best seem to be those who take control over their decisions and circumstances, stay in touch with a support system, forgive those who don’t understand, learn to ask for help and give it to someone else in any way they can, build up their faith and practice it while accepting their limitations and live creatively within their imposed boundaries.

Dr. Charles Lapp of Charlotte, North Carolina cautions patients to truly grasp the concept of limited energy. “It’s like money in the bank,” he told the audience when speaking at Newton Wellesley Hospital. “You can take it out and use it as you wish, but when it’s gone, it’s gone! It takes a long time for PWCs to replenish the chemicals in their cells that make energy.”

Sometimes, for a special occasion that we just have to attend, we will extend ourselves willingly and pay the price of days in bed for having gone but it was a conscious choice.

In What Ways Do You Help Yourself?

• “I listen to my body when it calls out with a need.”

• “I’ve learned to rest before I’m totally drained. “

• “I give myself plenty of time to prepare for anything, rest time.”

• “I gave up on trying to be perfect.”

• “I try to learn or enjoy every moment that I can.”

• “I don’t waste energy on negative thoughts.

• “I’ve learned to let people help me.”

• “I plan an enjoyable activity every day.”

• “I keep a journal.”

• “I bought an answering machine.”

• “I stay involved in my health care seeing a doctor regularly.”

• “I disconnect the phone whenever I need an uninterrupted nap.”

• “I relieve my emotions by taking a walk when I can, punching a pillow to release my anger and by crying in private about my loneliness and losses.”

• “I have simplified my life by learning to say ‘No.’ “

• “I accept myself as I am now, not as I was before.”

• “I keep faith in a cure someday.”

There is a ceiling on what ill persons can do for themselves. They desperately need the involvement of others in their lives.

Joni Eareckson Tada, author, artist, and musician who is a quadriplegic and is the president of JONI AND FRIENDS (JoniandFriends.org), a ministry to disabled persons, says “No one should have to suffer alone.”

Is There Anything Else You’d Like To Bring Up?

• “I wish we had a meeting place where we could go for companionship – on our bad days for comfort, on our good days to give it. We could do things together, talk, sing, do crafts, watch movies, do jobs for the organization when we could.”

• “Public education is very important. We need well persons to write articles about our illness and get them in the papers.”

• “Funds for research are desperately needed to find the cause and cure.”

• “Most people have no idea what life with CFIDS is like. It’s like a never-ending death process. I’m waiting to live!”

• “There’s a great need for compassion. It’s so important, especially when we are ill.”

• “There is a great need for well volunteers in our organization. PWC’s do what they can but it isn’t enough with our limited stamina. We need willing hands and compassionate hearts to do office work, publicity, advocacy, telephone hot line volunteering, fund raising – anything that a campaign or business needs to accomplish their goals.”

To make a donation or offer your services, contact the Massachusetts CFIDS/ME & FM Association (www.masscifds.org).

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10 thoughts on “Until We Have a Cure: What CFS Patients Want Well People to Know”

  1. wyogals says:

    WOW! This article covered an enormous amount of information. E-mailing on to others.
    Thank you. I’m a 22+ year veteran of ME/CFIDS. Isolation in Wyoming is a given, which gives newsletters like this such importance. You continue to bring information, inspiration, and hope to many. I’ve followed you for years. May we all join in as we can to bring the spotlight on this
    condition, those who suffer, and those who support us. Bless you…

  2. lochner says:

    Dr Klinghardt has gone on record as stating that 80% of people with CFS actually have the
    parasite C. pulmoni, also known as Klapowi. The symptoms for CFS and this parasite are
    the same.

    This parasite was brought back to the US by vets returning from VietNam in the mid 1970’s.
    It is thought that it jumped from animal to human when we bombed the hell out of VietNam.

    There is no test for this parasite. It is ‘hidden lung worm’. It does not – does not – reside in
    the intestine or show up in feces or urine test. It is in the respiratory!!!

    I have this parasite and have been treating the infection with vit c IV and ultraviolet light blood
    treatment for the past year. I am very close to being rid of it. The larvae can remain in the
    casings for about 90 days so it is difficult to eliminate the worm and larvae. Dead worms/parasites
    came through my skin in the chest area about three weeks into treatment. They are smaller than
    grain of sand. When they die, they emit an enzyme that seems to be poison – so detox is bad.
    Dr Ritchie Shoemaker has a toxins test on his website that will help you keep track of the poison.

    Be proactive and get well! You can do it!

    Barbara Lochner

    1. BeckieC says:

      Most chronically ill patients suffer a compromised immune system, which 1. fails to protect the immune system; 2. no longer destroys abnormal tissue growth or growth of infectious colonies in intestine and brain; 3. no longer detects foreign invaders that preclude good health.
      Modern medicine has not advanced fast enough to detect infections or infestations in blood tests or by utilizing ordinary medical procedures: 1. colonoscopy and upper GI series; 2. biopsies of outer digestive tract tissues: Large intestine only, or just the first 10 inches of the small intestine known as the duodenum. About 23 feet of the small intestine is never examined, biopsied, tested, or examined during invasive surgery. I was the exception to the rule because I hire the most outstanding physician specialists to treat myriad diseases involved in GWI or CFIDS.
      When I first found out what made me sick, I resorted to a couple of medical school university labs to test my blood, confirm that I suffered a plethora of man-made microbes, U.S.-made biological weapons.
      Mycoplasma, 13 different species are neither virus nor bacteria, detectable only through Polymerase Chain Reaction (PCR) blood test. Mycoplasma are tested at least twice in order to rule out false negatives. The most debilitating diseases, such as hypothyroiditis cannot be tested by blood at all. Proper diagnosis requires knowledgeable doctors to “SEE” physical signs and symptoms of an under-functioning thyroid. Outer 3rd of eyebrows missing; eyelashes completely gone; wads of scalp hair in the drain or in combs for extended periods of time; sudden, rapid weight-loss of 25 to 40 pounds on a person who has no fat to spare; dry, itching, peeling skin plaguing heels, bottoms, sides of feet, while other skin remains relatively healthy.
      PCR blood test was not available to insured patients until 2004, per Quest Diagnostics Laboratories. Yet, as early as 1980 Texas prisoners and Texas prison guards, infecting their small children at home, grew extremely sick from failed mycoplasma vaccines. Most Army Reserve and National Guard units are located on Texas prison grounds, shared facilities, such as picnic areas, fishing ponds or lakes with common boat docks, shared fishing equipment.
      I learned that colonies of viral and bacterial infections grow all along the walls of my small intestine. They remain untreated and undetected for an estimated 25 feet of digestive tract because they are clear as collophane or Siran wrap. Upper respiratory infections drain into infested stomach and small intestine. Infections are a vicious cycle.
      Small intestine infectious colonies remain invisible to most tomography, MRI or X-rays. Colon scopes reach only as far as the large intestine, which is JUST the last 3rd of the digestive tract. The only portion of the intestine involved in Irritable Bowel Syndrome is the last 3rd. So patients diagnosed with IBS are most frequently MIS-diagnosed for lack of pathology reports, biopsies of the small intestine.
      A cancer patient, or patient growing polyps in the large intestine, could have enjoyed a normal life span had intestinal disease and cancer been “detected early”. Had the gastroenterologist or oncologist bothered to biopsy the small intestine, the patient could have been disease-free.
      I recently learned that high neutrophils (specific type of white cells) in the urine and blood represent small intestine infections, infestations. Neutrophils are just one of 5 different white cell tests available through CBC and Metabolic panel that Family Practitioners draw on a regular patient. And my GWI-treating physician specialist has told me that high normal is NOT normal. Likewise, low normal is NOT normal.
      I have learned that the patient must be more informed than his doctor, or suffer the life-threatening consequences.

    2. sablehall says:

      This is an outstanding article. Having CFS for over 25 years I can relate to all statements. I realize now that if a person is not in our circumstance it will remain with the people who understand . I have seen over the years, from the first book I bought “From Fatiqued to Fantastic”, that knowledge on CFS has expanded because of research and persons with CFS using their knowledge to try to find out WHY. People and different groups that have no interaction with CFS are not interested , maybe these have to see in obituary articles how many had CFS that led to the problems preceeding death. Susan Hall

    3. catheyderosa says:

      I find that no one, even my family has bothered to research my various ailments, including CFIDS and FM. Those are the top two of my long list. These are conditions that affect the entire body. Not just bones, joints, muscles, but organs, glands and I can’t even think of a system they don’t affect. I consider these terminal illnesses. I have been ill for over 20 years and raised four children. I lost my husband because of it, but he was not worth it anyway. However, as a result, I am destitute and live in my 89 yr. old mother’s basement. She has no will and won’t do one, so if she dies before me, then what? Rely on my children? They are great, but I can’t say they are great enough to want to be stuck with me. I only have one daughter, so she would be my only hope. My brother and sister are worthless and my sister considers me a “drug addict”. The interesting thing is, she’s an alcoholic and my brother’s been in AA for around 6 yrs. I have wonderful doctors to talk to, thank God. They have written letters, that I haven’t even had the courage to give to my family yet. I get little help from my sister who lives a mile away and none from my brother, which I’d just as soon write both of them off my list. I recently read a Christian article “Can I disown my family”? I would love to, but since I live with my mother, who is just as bad as my sister and brother, what can I do? I am totally destitute and of course, my mother makes sure I know how wonderful she is to let me live with her, blah, blah, blah. I am grateful, but she has made my illness worse with the stress she causes me. None of my kids are married and all have roommates. But, can I rely on my one daughter to purchase something with a cottage or a “mother-in-law” apt.? I’m afraid to ask because I’m afraid of the answer. There are so many of us who face the same issues I do and it breaks my heart. I live in Colorado Springs and we used to have an organized Fibro/Lupus group, but we are down to about 6 of us going out to lunch once a month. I would love to start another official group, but I don’t have the energy or the stamina. What is wrong with this picture? We don’t have any kind of fundraisers, except for Fibro Day, May 12th. I found out about that a few years ago from talking to someone from some organization I have lost touch with. My mother (believe it or not) and I called all the local radio stations and told them about it. Whether or not they all announced it or not, I don’t know. I posted flyers in stores, on our door and emailed the info. But, that was the last I heard about it until today, when I got so fed up with my family that I started looking into things again. I’m glad I did. I’m not sure what we can do as patients to promote this day and try to get donations for research, but I wish some of these wonderful organizations would let us know what we can do to help. Also, a good point,
      do you ever get an envelope in the mail asking to donate to FM or CFIDS, ME or all? NEVER! I personally think something should be done about that by the well ones. People have no idea the devastating affects of these awful DISEASES! My heart goes out to all of you. I would like to be a regular on here. I’m not real familiar with message boards and chat rooms, but I would love to learn. We all need to support each other – no one else will! My heart is with you all! Cathey

    4. IngridsHOPE says:

      This year, on Christmas Eve (’13), I got a voice message disinviting me from the Only Holiday party (with my family and friends)that I look forward to all year! The host’s reasoning? That they thought I was drunk at thier holiday party last year.
      It just so happened, that the night of last year’s Holiday party, I was really ill, I was having trouble walking and talking, but I needed to socialize so badly,so I went anyway. I was Not drunk! I barely had 2 glasses of wine!
      I hate being missunderstood and judged. And I specially hate that my illness effects my son, who (most likely by association) will never be invited again!

  3. 77Lmoy says:

    Fabulous descriptions of what we really go through. I’d love to show this article to friends, but I’m afraid they’ll only look at it as “me focusing” too much on the problem and NOT thinking on a more positive level, which just creates anger. We don’t want to talk about it–just be understood and given respect.

  4. BeckieC says:

    I have always spoken out about CFS and Gulf War Illness (GWI) because nobody else will. Needless to say, I don’t care whether people think I obsess or not, dwell on my disease or not. And most of my relatives, narcissists in love with themselves, other not-so-bright people, ordinary medical doctors . . . will argue with my research, my editorials, my health advice website. They are not sick, not very well educated, do not care what happens outside the 4 walls of their home.
    But when grandchildren, to be vaccinated to death for mandatory vaccine schedules, arrive sometime in the future, all groups will suddenly put on act of care and concern. All will want to know in a few seconds of undivided attention what has taken me 23 years since Desert Storm 1990 to learn. Ne’er do wells, all wanting to know what they’ve missed for the past 30 years.
    I know that I am doing the right thing by disseminating as much info as possible, helping people choose and decide NOT to live a lifestyle that leads to CFS and GWI. At least I can look myself in the mirror on the few precious days that I can rise out of bed at all. And I can say that I contributed heavily and whole-heartedly to pushing toxin-induced, vaccine-derived diseases into extinction long before most people knew what CFS or GWI were.
    That’s more than all the mouthy people who have nothing better to do than ridicule, spew forth hypercriticism, and judge disabled victims. The loudest offenders are bullies who will find themselves instinct in due time. Because nobody likes a bully.

  5. cherylbenson says:

    I have yet to see them represent the severely affected. they also included FM patients, not the same by far as ME or CFS the latter much more debilitating and over 50 symptoms. I have both. Also only 30 people were in this so called survey. It shouldn’t have even been published

    1. BeckieC says:

      I am one of the severely afflicted with GWI, which is far worse than CFS. GWI is compared with final stages AIDS, except that GWI suffering factor is so much greater than final stages AIDS.
      I find among my own bedfast, housebound Veterans that the sickest are so bedfast they cannot log on to a computer for 10 minutes each day. Bedfast Veterans are so sensitive to electronics and radiation that they cannot conduct a telephone interview.
      I suspect most people’s responses would be about the same as they are in this article restricted to Massachusetts. Most people DO NOT CARE about FM, ME-CFS or GWI, because it is not happening to them right now, right here, today, right this minute.
      Surveys among media show that American public has a 10-minute attention span. Most people do not even remember Desert Storm, 1990-91, the most toxic war in history of civilization. That war was just the beginning of GWI, 100% fatal 100% of the time.
      Most people do not know that soldiers suffering GWI have died at 50% rate, regardless of where they served:Germany, Saudi Arabia, Iraq, Bahrain, U.S. And the soldiers just suffering CFS for lack of vaccines both stateside and in Saudi Arabia are no longer working, no longer apparent in the workforce.
      This scenario is somewhat like the unemployed. Somebody out of work only appears in the percentages as long as they draw unemployment benefits. When benefits are gone, so are the valid numbers of unemployed who become homeless, who fall through the cracks. The sickest of the sickest have fallen through the cracks in every analysis, article, clinical study, and database.
      But I thank God for the people who keep trying to get information out there about however many people are impacted. This article was presented only by Massachusetts. Had it not been for Massachusetts disability website, I never would have found my most prized friend and my long-term GWI-CFS doctor in Dallas, Texas. I was a federal Civil Service paralegal assisting Iraqi-era military in exiting the service along Texas Coastal Bend and Texas Rio Grande Valley, applying for disability for every ailment and affliction they realized from the moment they entered military service.
      I didn’t want to witness soldiers from the 2nd most toxic war in Iraq to get out of military service with 10% preference points for hiring within federal employment, while capturing absolutely NOTHING – 0% from VA for disability compensation and for ongoing VA healthcare treatment. That is, lots of hiring opportunities from which sick Veterans are fired within a year or so. And that is, soldiers pursuing employment without any healthcare or compensation.
      That exact scenarios has been me for 23 years. Fired about a dozen times for being too sick to report to work, including federal Civil Service. This past year, I recieved 10% VA compensation for an illness I do not have, have never suffered. I fight on, next hiring an attorney to file suit in every federal court available to me for back-pay, Army medical malpractice, Army medical negligence, ad nauseam.
      I appreciate the effort that went into the publication.

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