Posts Tagged 'support'

Dear HealthCare Professional

We have seen all sorts of comments by healthcare professionals about patients with ME (myalgic encephalomyelitis) and what is “really” wrong with them.

These are just a few comments (and what is implied by those comments).

They just don’t want to work (they want to be on disability, they stand to gain from disability),

are bored (so they spend their time imagining symptoms),

can’t cope with everyday stress (they need psychological help),

don’t exercise (and are deconditioned),

are fat (and deconditioned),

don’t want to be responsible for themselves (they want to go on disability and live an easy life),

want stimulants, narcotics, etc (they are drugseekers),

want disabled parking tags (because disability is a perk).

 

Dear Healthcare Professionals,

Comments about patients with ME (myalgic encephalomyelitis) such as those made by healthcare professionals like you are painful. I hope this post helps you understand some of our pain and frustration.

My two young adult sons have ME which is a complex and challenging disease.

Both of my sons meet the IOM criteria (this link is to The Clinician’s Guide and you can access the full report ). They also meet the CCC criteria for ME.

One son suddenly became sick since he was 12 years old. He is in his early 20s now.

My other son gradually sick about 15 months later. He too is in his 20s.

Neither of my sons are/were lazy.

A few specifics about my sons.

One son taught himself to multiply before he went to kindergarten.

The other was reading middle school level books at age 5.

They were lively, curious, and fully engaged with life, family and friends.

At the time they got sick they were competitive swimmers, swimming upwards of 20 miles a week.

The sudden onset of one son’s illness rendered him housebound, unable to do schoolwork, inexplicably unable to do mental math that had been effortless for him at age 5, unable to socialize, unable to leave home for things other than medically related appointments. In other words – no fun.

My other son had a gradual onset and he too is housebound and partially bedbound, unable to retain what he reads, unable to socialize, unable to leave home for anything other than medically related appointments. In other words – no fun.

In the past 10+ years since they got sick my sons have diligently done everything suggested by healthcare professionals (including various specialists) – to little avail. Most medications we have tried have produced no benefit and few produce enough benefit to endure their adverse effects.

My sons have not been able to learn to drive – frequent, unexpected syncopal episodes, impaired decision-making, and slowed reaction times would make their safety and that of those around them a significant concern.

My sons’ limited capacity for (cognitive or physical) exertion is not a result of deconditioning.

For one son, the exertion intolerance (a hallmark of this disease) began quite abruptly with the sudden onset of his illness.

For my other son, the exertion intolerance and the disease revealed themselves more gradually.

And as I mentioned above, when they became ill, they were swimming at least 20 miles a week so they were in great physical shape. Therefore deconditioning is in no way an explanation of their exertion intolerance.

These days cognitive and or physical exertion in excess of the strict limits imposed by this horrible disease, produce a dramatic exacerbation of symptoms (post-exertional malaise or PEM) that can last for weeks and render my sons even more disabled than their baseline (which on a good day is about 30% of normal).

All too often I see comments by healthcare professionals saying these patients want stimulants, narcotics, Xanax, disability and disabled parking tags.

My sons take no stimulants (bad reactions to them), no narcotics, no Xanax, etc.

Neither of my sons want to use the disabled parking tag that we have – they don’t want to feel labeled by doing so. So we use the tag quite sparingly – but then again my sons are out of the house so rarely that any use is sparingly.

My sons don’t get SSDI (Social Security Disability) – they have never been able to work so therefore never accrued work credits to qualify for SSDI and having never worked, they never had the option of long-term disability insurance.

Since my sons’ illness onset and because they are so severely impaired by this disease, I have been their 24/7 unpaid caregiver.

There is NOTHING to gain for us with this disease and we do our best not to think about the significant losses (independence, educational aspirations, making a difference in the world, spontaneity, vacations, and on and on).

So you see, your comments about us are not accurate. Nor are they appropriate. And inaccurate, inappropriate, disparaging, and or demeaning comments such as yours cause significant pain and detract from your job which is to help patients.

We don’t need or deserve additional pain and or hardship in our lives.

In public and in private, we deserve respect, compassion, appropriate diagnoses and appropriate treatment. NOW!

Sincerely,

A parent of two patients with ME

May 12th is ME Awareness Day

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ME(cfs) International Awareness Day

 

Make time today to honor of all patients who suffer daily with this wretched illness.

 

Most patients are too impaired to advocate.

So our plea is to those with better health,

PLEASE make more time regularly to help patients.

Contacting Congressional Representatives – Call to Action

There is an action to push for $7 to $10 million for an RFA (see below for definition) — This would be NIH money specifically to fund ME(cfs) research. (Yes, we need more than that but this request is in line with CFSAC recommendations and the effort is already underway. We can continue to work on getting more.)

1) This link is to a “Dear Colleague” letter and asks Congressional Members to join Reps. Lofgren (San Jose) and Anna Eshoo (Mountain View, Palo Alto) in raising awareness about ME/CFS among Congress. This is important because such letters signal to other politicians what interests some politicians have and are used for “trading favors” when it comes to voting/ supporting certain things. https://dl.dropboxusercontent.com/u/57025850/Dear%20Colleague%202%20-%20letter%20-%20March%202014.pdf

2) This link is to a letter, signed by 11 Congressional Members, that asks Dr. Collins for $7-$10 million to be earmarked for ME/CFS research. (Currently no funds are specifically set aside for ME/CFS research each year.) https://dl.dropboxusercontent.com/u/57025850/Congressional%20letter%20-%20Dr.%20Collins%20-%20March%202014.pdf

What can you do? 

Start by reading the letters.

1) If your Congressional Rep. has signed the letter, contact them and THANK them for their support. Something as simple as “Thank your for your attention to and support of research into the medical condition myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS).” They get little positive feedback so everything helps. Please thank Dr. Gutman for starting this at ben.gutman@mail.house.gov. It’s extra good if you’re Rep. Lofgren’s constituent but even if you’re not, that counts too.

 

2) If your Congressional Rep. has NOT signed, contact them and ask them to do so. Remember that peer pressure works on them as it does for other people. Seeing their colleagues sign helps. If your relatives or friends who live outside your area can send it to their Congressional members, that helps as well. More signatures = more power.

Congressional contact info can be found via this link http://www.contactingthecongress.org/).

Before you do call or write, plan out what you want to say.

Tell them (write) you are a constituent (i.e. you vote in their district), tell a bit of your story (perhaps 5 minutes), why research is important to you, and ask the Congress person to read and considering signing both letters. Do not be put off by speaking to staff only and not the Congress person; staff are influential. Remember also, they work for you so don’t be shy!

Online forms for many Congressional offices do not provide for attaching documents . Since you need to attach the Dear Colleague letter and the letter to Dr. Collins it probably is best to call and ask for an email address (unless you already have one).

Let them know that you will follow-up in 2-3 weeks to find out if the Congress(wo)man has signed or not.

Ask them to forward a paper copy of the signed letter to you if possible and report to speakupaboutme AT gmail DOT com who signed – name, state, Congressional district. If they did not sign, remember to politely ask why and post the reason along with the Rep.’s name.

Make a note on your calendar to follow-up in 2-3 weeks.

If they sign please be sure to thank them for doing so.

FYI (and in case they ask)
Congressional Reps who have already signed:
Anna Eshoo (Mountain View, Palo Alto, Saratoga, along the coast)
Zoe Lofgren   (most of San Jose)
Mike Honda (
Sunnyvale, Cupertino, Santa Clara, Fremont, Newark, North San Jose, and Milpitas)
John Garamendi (Sacramento, Fairfield)
Sheila Jackson Lee (Texas, Houston)
Suzan Delbene (King County, Washington)
Eric Swalwell (Los Gatos, Cupertino, San Jose parts)
Scott Peters (San Diego, Poway)
Daniel Lipinski (Chicago suburbs, Illinois)
John Lewis (this is *the* John Lewis, the Civil Rights leader, from Atlanta, GA)
Eleanor Holmes Norton (Washington, DC)

Request for Application (RFA)

An RFA is a formal statement that solicits grant or cooperative agreement applications in a well-defined scientific area to accomplish specific program objectives. An RFA indicates the estimated amount of funds set aside for the competition, the estimated number of awards to be made, whether cost sharing is required, and the application submission date(s). For cooperative agreements, the RFA will describe the responsibilities and obligations of NIH and awardees as well as joint responsibilities and obligations. Applications submitted in response to an RFA are usually reviewed by a Scientific Review Group (SRG) specially convened by the awarding component that issued the RFA.

http://grants.nih.gov/grants/glossary.htm#R11

To contact your member of Congress: http://www.contactingthecongress.org/

https://dl.dropboxusercontent.com/u/57025850/Dear%20Colleague%202%20-%20letter%20-%20March%202014.pdf

https://dl.dropboxusercontent.com/u/57025850/Congressional%20letter%20-%20Dr.%20Collins%20-%20March%202014.pdf

You might consider attaching this for your Congress(wo)man and staff to read:

http://www.fda.gov/downloads/ForIndustry/UserFees/PrescriptionDrugUserFee/UCM368806.p

With hopes that 2014 will be a year of improved understanding of ME and more appropriate action based on that understanding

In 2014, we hope

your sense of purpose is renewed,

your support network grows larger,

you know that your views are valued,

you learn from others, and they from you,

your days are enhanced with moments of joy,

as you reach out in kindness to others, they reciprocate in turn,

practice makes it easier to say no/not now thank you so as not to exceed your limits.

 

– – – – – – –

The IOM Committee on Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome will have its first meeting Monday the 27th and Tuesday the 28th of January 2014.

The morning session on the 27th of January and the session on January 28th are closed to the public.

 

The afternoon session of January 27th is open to the public. (Location: Keck Center
500 Fifth St. NW, Washington, DC 20001

 

Information about agenda, registration and (for those who cannot attend in person) viewing via Webcast will hopefully be available soon.

 

http://www.iom.edu/Activities/Disease/DiagnosisMyalgicEncephalomyelitisChronicFatigueSyndrome.aspx

http://www.iom.edu/Activities/Disease/DiagnosisMyalgicEncephalomyelitisChronicFatigueSyndrome/2014-JAN-27.aspx

I live in fear


(Permission to share)


 


Some ME(cfs) community members feel their voice is constantly threatened from within the community. This post (https://speakupaboutme.wordpress.com/2013/10/13/crimes-criminals-and-the-need-for-justice/) helped remind people that those of us in the ME(cfs) community are not “the enemy”. That reminder prompted one patient to ask that the following be posted:



I live in fear – all day every day.


It shouldn’t be this way but it is.


I live in fear of the long-term effects of ME/CFS and of being so severely sick starting at such a young age.


But this is not my only fear.


I live in fear of not being appropriately treated for my illness (or for additional illnesses) by medical professionals who disbelieve me and belittle me if I reveal that I have ME/CFS.


But this is not my only fear.


I live in fear of people finding out that I have ME/CFS and belittling the significance/severity/impact of ME/CFS.


But this is not my only fear.


With so much fear in my daily life, I would like to feel I get support within the ME/CFS community.




Yet even within the ME/CFS community


I live in fear.


I live in fear of adding my voice within the community.


I live in fear that if my views aren’t as outspoken as the views of others I will get shouted down – this is often done publicly, loudly, and vehemently.


I live in fear that I will be denounced by those who say (or imply) that any view that differs from theirs is worthless, is shameful and makes me an enemy.


I live in fear of getting involved – even though the community needs all the help it can get – because my voice will not be valued or respected, or even heard above the clamor of those who proclaim theirs is the one true voice.




I am not alone….


How many others are there like me in our community, who live in fear?


How many others are there who, like me, fear giving voice to their views?


How many others are there who, like me, fear getting involved in advocacy because they will be labeled, demeaned, belittled and demonized because of their views?”




We all want better lives for people with ME(cfs). We all deserve to be seen, to be heard and to be valued.




BUT


If only certain points of view are considered valid – we shut out many voices.


If we shut out many voices and viewpoints, we are also shutting out many potential advocates.


If we shut out many potential advocates, we limit the work we can do.




In supporting each other, in listening to and respecting differing views, more people will work with us because they feel respected, supported and valued.


With more people working with us, we can get more done.


With more people working with us, sharing the work that needs to be done, we might even have a little bit of energy left over at the end of the day. Wouldn’t that be nice?


 


 


 

 

Call to Action – petition to sign and share widely

In May, we told you about this letter (https://dl.dropboxusercontent.com/u/89158245/DHHS%20Definition%20Initiatives%20May%2012%202013.pdf) to Secretary Sebelius, Dr. Koh, Dr. Friedan and Dr. Collins about the need for an appropriate definition for patients with ME.

More details about the letter and FAQs can be found here (https://speakupaboutme.wordpress.com/2013/05/15/the-time-is-now/Of all the issues that we face today, the one issue that has created the most problems are the diverse case definitions associated with our disease. This single issue has severely impacted research, drug development and clinical care and misled the medical community on the very nature of this devastating disease, causing many doctors to not believe that their patients are really sick. Until this issue is addressed, patients will continue to pay the price. This must stop now.”…..)

CALL TO ACTION – A petition (http://www.thepetitionsite.com/255/349/958/fatigue-is-not-a-disease/ ) is now available for signing.

 

Anyone from anywhere can sign.

Please share the petition widely and encourage others to sign also.

 

Many thanks to Mary Dimmock, Donna Pearson and Erica Verillo for generating the petition.

The time is NOW!

Of all the issues that we face today, the one issue that has created the most problems are the diverse case definitions associated with our disease. This single issue has severely impacted research, drug development and clinical care and misled the medical community on the very nature of this devastating disease, causing many doctors to not believe that their patients are really sick. Until this issue is addressed, patients will continue to pay the price. This must stop now.

Today, CDC states that there are at least 5 different definitions for “CFS”. Three of these definitions, the Canadian Consensus Criteria, the ME International Consensus Criteria and the Pediatric Criteria require hallmark criteria like PEM/PENE and neurological, immunological and energy production impairments. Unfortunately, two of the most commonly used definitions, Fukuda and Oxford, do not require these hallmark criteria. In fact, Oxford only requires 6 months of disabling fatigue – no other symptom – and allows primary psychiatric disorder.

The result? Myalgic encephalomyelitis, the disease seen in outbreaks throughout the twentieth century and recognized by the World Health Organization in 1969, has disappeared and in its place, we are left with “CFS”, an amorphous umbrella of unrelated fatiguing conditions including, according to the literature, depression, deconditioning, medically unexplained chronic fatigue, and for some researchers and clinicians, fatigue due to “excessive rest” or “false illness beliefs”. In clinical practice, the diagnosis of CFS is given to a heterogeneous mix of patients – those with ME, those with the varied fatiguing conditions listed above and those who were misdiagnosed or whose doctors use the diagnosis of CFS as a catchall for unexplained fatigue. And in 2012, the American Family Physician article proclaimed that Oxford and Fukuda are the appropriate definitions for “CFS” and further stated “[CFS] patients with poor social adjustment, a strong belief in an organic cause for fatigue, or some sort of sickness benefit (i.e., financial incentive) tend to have worse responses to [cognitive behavioral] therapy.”

Exactly what disease are we talking about here?

Patients have paid dearly for the proliferation of these overly broad and non-specific definitions – bedbound or homebound, unable to work or take care of their families, suffering for 10, 20, 30 or more years from the myriad symptoms that plague their bodies, unable to get adequate medical care and ultimately more likely to die prematurely from cancer, cardiovascular disease and suicide.

As Dr. Carruthers stated in the ME International Consensus Criteria, “Research on other fatiguing illnesses, such as cancer and multiple sclerosis, is done on patients who have those diseases. There is a current, urgent need for ME research using patients who actually have ME.” We must have a disease appropriate definition for ME that is separate and distinct from all the other unrelated conditions encompassed by the overly broad, fatigue-focused “CFS” definitions.

To that end, a group of patient organizations and advocates have submitted the letter at this link (http://bit.ly/YDPnmJ) to DHHS asking for DHHS to:

  1. Adopt a disease-appropriate case definition for ME now, utilizing the Canadian Consensus Criteria as recommended by DHHS’ own CFSAC. Train doctors with appropriate medical guidance.
  2. Stop using the terms “CFS” and “Chronic Fatigue Syndrome” along with the non-specific definitions like Fukuda and Oxford and the medical education material based on these definitions.
  3. Manage the adoption of the Canadian Consensus Criteria to ensure that insurance and disability do not lapse and that no patients fall through the cracks.
  4. Fully engage ME stakeholders in the planning and execution of the adoption of the Canadian Consensus Criteria.

You may ask whether we really know enough about the disease or whether we need more study before we change definitions. Certainly, with more study, we can better operationalize the definition and validate biomarkers to make patient diagnostics easier. But in the meantime, we know that PEM/PENE is a hallmark symptom that reflects a distinctive biological pathology and we must utilize a disease definition that requires that symptom.

Some of you may prefer the ME International Consensus Criteria over the Canadian Consensus Criteria. The ME-ICC certainly has some excellent features. But practically, the Canadian Consensus Criteria has been used clinically and in research for a decade. Studies have been done with it. The U.S. government has posted the IACFS/ME Primer, based on the Canadian Consensus Criteria, on DHHS’ Guidelines.Gov. This is more likely to be acceptable to DHHS and is a reasonable first step, especially when considered against the alternative of continuing to use Fukuda while more study is done.

What about dropping the name “CFS”? You may be concerned that this means we will lose the literature base that has provided insights into the pathology of ME. Admittedly, some of the best articles used the term “CFS”. And so do some of the worst. The point is that the literature base is a mess because multiple diverse and unrelated definitions have inexplicably been allowed to use the very same name for years. We all should stop using the term “CFS” because it no longer has any real meaning.

Finally, what about the name ME? Does it really describe the disease? Is there a better name? That is a question that science will need to decide over time, something that has happened in many other diseases. But what is clear is that “chronic fatigue syndrome” will never be an appropriate name and should never have been established as the alternative or synonym for ME.

Patients have borne the brunt of the failure to address the definitional issues for the last thirty years. We cannot wait for more study to finally stop the harm being done to patients, especially given that more study with non-specific definitions will only perpetuate the problem. The time to address this problem is now.

For those of you who wish to sign this letter and become a part of this vital initiative, we will provide a mechanism to do that within a few weeks and will send out additional information at that time.

The letter can be found here:http://bit.ly/YDPnm

Additional background: Questions and Answers on this initiative

Answers to specific questions and concerns that patients, carers and advocates have:

Q – We cannot abandon the patients that have been incorrectly given a “CFS” diagnosis.

A – This is very true. It is critical that implementation of this change be carefully managed so that these patients are re-evaluated and given a correct diagnosis. If unexplained conditions remain, it will be necessary to perform the studies needed to understand these conditions and establish more appropriate names and definitions.

Q – We cannot afford to have our disability or insurance impacted.

A – Yes, this is very important. It will be important to have a carefully thought out implementation plan that manages this to ensure that patients do not lose disability or insurance benefits.

Q – The vast majority of the 6000 articles in the literature use the name “CFS”, not “ME. If we stop using the name “CFS”, we will lose all that literature.

A – Currently, when the search term myalgic encephalomyelitis is used, the CFS literature is returned. This will not change. But that literature base contains both articles relevant to ME but also a significant number of articles about “CFS” and child abuse, false illness beliefs, deconditioning, etc. This creates significant confusion for anyone trying to use that literature. For that reason, the non-specific term “CFS” should be abandoned by the U.S. and more specific terms like ME used going forward.

Q – We have more important issues to deal with such as funding, and attracting new doctors and researchers.

A – It is critical that we have more funding but if we don’t fix the definition issue first, we will continue to study the wrong disease and have progress impeded by poor definitions. The resultant confusion will make it difficult to attract young researchers and doctors who will not see career opportunity in “CFS”.

Q – Research centers have recently been established and if we stop using the name “CFS” we will confuse our donors.

A – It is true that a number of research institutes have recently been opened and some of them use the term “”CFS” or even “CF”. But the donors to these institutes today have a personal connection to the disease. They will continue to fund. But attracting additional funders will be negatively impacted by the confusion around the disease. The sooner we can resolve this issue, the better in the long run.

Q – CFS biobanks have been established using Fukuda and we don’t want to lose those samples.

A – The biobanks that have only been characterized by the Fukuda definition could contain a mix of patients with the hallmark criteria of ME and those who do not have these hallmark criteria. Using these mixed samples will continue to confound research. It is important that we have a well-characterized set of samples in the biobank and know which samples are from ME patients.

Q – ME may not be the right name. Shouldn’t we wait for the science to figure out what the right name is?

A – It is possible that with further study, we will determine a better name than ME and it will naturally evolve. But ME, adopted by the World Health Organization in 1969, is the best placeholder until that time and avoids the serious issues caused by the use of the term “CFS”.

Q – The best course is to tighten up the “CFS” definition, not get rid of it. Then we can keep the literature base, the biobanks, etc.

A – There are two problems with this approach. First is the long history of the term “CFS”, which is non-specific and now widely associated with diverse conditions, especially including psychiatric issues. This has severely tainted the term and made it clinically meaningless. Second, the term “CFS” is used for those studying patients that meet Oxford criteria (essentially chronic fatigue) and we have little control over that continued usage.

Q – Lenny Jason recently published a paper that reports that the ME-ICC and the Canadian Consensus Criteria includes more psychiatric co-morbidities than the Fukuda and recommended that more study be done. Does that mean we should wait to recommend any criteria until then?

A – Dr. Jason’s paper did find that the ME-ICC found more psychiatric co-morbidity than Fukuda. But Dr. Jason acknowledged the need for more study because this one used a questionnaire designed for Fukuda CFS, that they were unable to assess one of the key ME-ICC criteria because of data on this criteria was not available. Further, the study did not look at homebound or bedbound patients.

But what is also significant in Dr. Jason’s study is that ME-ICC identified a much tighter group of patients (39 compared to 113 for Fukuda) with more functional impairments and physical, mental and cognitive problems seen in ME-ICC patients than in those meeting the Fukuda criteria.

Clearly additional study is needed to operationalize the definition and to improve how it characterizes the disease, especially around subtypes. But continuing to use the 19-year-old consensus driven Fukuda – which is also not operationalized and does not describe subtypes – in the meantime is not going to advance that knowledge and will only continue to hurt patients.

The Canadian Consensus Criteria has been used clinically and in research for over 10 years and better represents the disease. Using the CCC now will allow us to begin to make forward progress in research and identifying treatments and begin to address the disbelief in the medical community.

Q – Is this the same thing as the Name Change initiative?

A – No. This is first and foremost about the definition being used – adopting a definition that effectively describes the disease and stopping the use of the definition – and name – that have created so much confusion and problems.

Q – Why CCC and not ME-ICC?

A – The CCC has been used clinically and in a number of studies, providing the experiential foundation for its use. It is expected that as additional data is obtained, this definition will evolve. This must be done in partnership with the experts who developed the ME-ICC and the CCC.

 

With many thanks to Mary D.