Better Media Coverage of ME/CFS -- Petition

[slayadragon]

Many (I suspect almost all) people with ME/CFS feel that the media could be doing a better job covering our disease.

To that end, a few other people and I are spearheading an initiative from sufferers with the disease to educate the media about ME/CFS and to provide them with the information and resources that they need to cover this topic accurately, thoughtfully and thoroughly.

Rather than have the initiative come from a particular group, we wanted it to represent sufferers as a whole. We thus put together a petition detailing some basic relevant issues.

The goal is certainly not to chastise the media for anything that theyve done in the past, but rather to give them the tools and the motivation to do a good job in the future.

The petition will be distributed to the media along with a variety of supporting materials. These will include a review of previous media coverage about the disease; a medical literature review with easy-to-understand summaries of each study; a summary of research issues with regard to XMRV; an in-depth critique of the Lancet study claiming that graded exercise therapy and cognitive behavioral therapy can be helpful for the illness; a history of the illness; a discussion of the
various names and definitions for it; an overview of symptoms and various treatments being tried; various groups and individuals that can serve as sources; and others.

One important part of the press materials will be case studies of sufferers, including pre-illness photos. These will be used to demonstrate the seriousness of the disease (as opposed to the trivial conception that people have of it) and to make people more cognizant of the extent to which valuable lives have been lost to it.

Joey was gracious enough to agree to make his story known, as the first case.

We need more people for the case studies (wed like to have a bunch of them), but we want those participating to let us use their real names. Please let me know if you have any ideas of folks who might be willing.

We also plan to have sections where patients can contribute comments about their disease, including descriptions of That Thing Thats Not Fatigue and My Worst Experience with Medical Professionals Not Believing Me About My Illness.

We welcome ideas for other similar sections or for other components of the media packet.

The small team of people who have been working on the project so far includes Khaly Castle, Dr. Yes, Otis Quila, Liz Willow and John Herd. If folks would be interested in working on the project with us, please let me know!

Khalys introduction to the project is on her blog on CFS Untied:

http://networkedblogs.com/gFBhK

CFS Untied also is serving as a information resource center:

http://www.cfsuntied.com/

Check out Joeys story in the Case Studies section.

Heres the petition site. Please take a look and consider (electronically) signing it.

http://www.change.org/petitions/upd...scientific-and-economic-climate-re-me-and-cfs...

Im going to put the petition copy on the next post on this thread.

Best, Lisa

 

[slayadragon]

Petition: Update journalism to reflect the current political, scientific and economic climate regarding the illness known as Chronic Fatigue Syndrome.

Petitioning: Editors, reporters, producers, bloggers and other members of the media worldwide.

We, the undersigned, are individuals from around the world who suffer from the disease observed in an outbreak in the Lake Tahoe area in 1985. This illness was given the name Chronic Fatigue Syndrome in the U.S. in 1988, and is known by a variety of other names -- including Myalgic Encephalomyelitis -- in other countries.

We petition the journalistic community to do the following:

* Dont refer to our illness as Chronic Fatigue."

Our disease has a variety of characteristics in addition to the state of neurological and mitochondrial dysfunction that the Centers for Disease Control has mischaracterized as fatigue. We hope that soon, our disease will be better defined and renamed, possibly as Myalgic Encephalomyelitis (ME). In the meantime, please refer to our disease by its official U.S. name (Chronic Fatigue Syndrome or CFS) or by official names used in other countries.

* Convey the fact that this is a multi-systemic illness with effects that are immeasurably worse than any level of fatigue.

The core components of our illness are insufficient energy production, chronic immune inflammation, nervous system dysfunction, and post-exertional relapse (worsening of symptoms after even trivial amounts of mental or physical activity). However, sufferers experience a wide range of other symptoms, including severe cognitive dysfunction, inability to sit or stand up, excruciating headaches, extreme noise and light sensitivities, muscle stiffness and pain, heart dysfunction, immune system abnormalities, dystonia, partial paralysis, a variety of rare cancers, and many other debilitating or deadly health problems.

* Focus attention on the fact that the governments of the U.S. and most other nations have seriously underfunded our illness.

Research funding of our disease is minuscule considering its severity and prevalence. The NIH research budget for 2012 allots $114 million to lupus, $135 million to multiple sclerosis, $428 million to depression, $3 million to hay fever -- and only $6 million to CFS. http://report.nih.gov/rcdc/categories/

* Make it clear that regardless of its cause, our disease is worthy of increased funding, acceptance and attention.

The possible connection between CFS and specific retroviruses is an extremely important research topic since it has the potential of leading to a cure for our disease. However, regardless of whether a retrovirus is causal, our disease is equally devastating and warrants better media coverage.

* Present information about the disease in fresh ways.

This tired headline has been used for more than 20 years: "CFS is finally a real disease." CFS was shown to be not only a real but a very serious disease more than two decades ago, as more than 4,000 published studies confirm. Those suffering from our disease face a lack of medical care, poverty, isolation, social stigma and inadequate research funding. Its time to come up with new story lines.

* Focus attention on the most severely ill sufferers of our disease.

Many people with our disease spend decades of their lives curled up in darkened silent rooms. They are unable to sit or stand, to tolerate any light or sound, to summon the strength to speak, to focus on or articulate a thought. Covering their stories will reveal to the public the truth about just how horrible this illness really is.

* Use a critical eye when evaluating scientific studies.

There are a variety of case definitions in use for CFS research. Each selects a different patient cohort for study -- with some excluding severe sufferers of our illness and including people with ordinary fatigue or uncomplicated major depression. If research does not focus on people with our disease, its results are not applicable to us.

* Be wary of suggestions that any sort of easy fix may be helpful for our disease.

Medical research shows conclusively that CFS is a serious physiological disease and that sufferers often have negative physiological responses to even small amounts of exercise. Nonetheless, a small group of psychiatrists funded by large U.K. and U.S. governmental grants continue to get media coverage for their flawed studies suggesting that CFS can be effectively treated with psychotherapy or exercise therapy. Many of us have experienced physical, financial, occupational, societal and psychological harm as a result of this false information.

* Look to new sources for information and comments about our illness.

Government sites such as the CDCs do not necessarily communicate the true nature of what we have. The CFIDS Association of America has failed to convey accurate information about the seriousness of our disease, and now states that it has decided to focus on research rather than patient support or advocacy. We deserve better.

* Bring all of your journalistic skills to bear when reporting on our disease.

People with our disease get sick young, usually in our twenties and thirties. Most remain sick permanently, with the ability to build families or pursue careers lost or severely compromised. Many die young, frequently of cancer, heart disease or suicide. Governments trivialize our disease. Few physicians are willing to treat us. Just getting a correct diagnosis can take years. Almost no one knows anything about the suffering, abandonment and indifference we endure.

CFS has a trivial name, but it is a deadly serious disease. Many people have died from it and many more are consigned to a living death. One million individuals in the U.S. and 20 million people worldwide suffer from it. Help us make the world aware of it.

Thank you.

 

[SilverbladeTE]

The abuse of people with ME, is the same evil as racism and anti-Semitism, abuse of Moslems etc etc.
with us, it's based partially off a sick mentality in parts of the medical establishment: gross, uncaring arrogance and denigration, even sadism
and largely deliberate campaign to make us "untouchables" and thus prevent us getting proper treatment/help as part of a conspiracy to deny us our rights as citizens and thus financial/medical aid which some folk do not want for reasons unknown.

hence, we should be campaigning to be protected under laws against BIGOTRY.

 

[insearchof]

hi Slayadragon

I do not know who might be responsible for sending this out to the media, but there are a few errors which might require addressing, before it is sent out.

ME is not CFS. USA CFS is not known in other countries (certainly not here in Australia) as ME. In fact in the UK and Australia where it was once acknowledged prior to 1988, it no longer is. The RACP Guidelines are on CFS in Australia, and do not not define ME, nor do they mention the term ME/CFS. ME/CFS is a coloquial term and has no medical status.

ME is a separate medical disease state described in over 50 yrs of medical literature, as an illness characterized by central nervous system dysfunction. It has acute onset presentation caused by Enteroviral infection with *measurable CNS dysfunction. It occurs in epidemics as well as sporadic cases. In Australia it has a ICD classification under ch 6 for the nervous system: ICD AM 10. CFS has no ICD classification at all in Australia, it appears in the index only. CFS as currently defined, is characterized and distinguished by the medical profession in contrast to ME, as a syndrome ( cause unknown) in which unremitting fatigue is the key feature. This is not a key defining feature of ME according to the medical profession. CFS is also distinguished by the medical profession from ME on the basis that CFS is regarded as non infectious, and it may have either a sudden or gradual onset. This is not the case in primary ME, where there is acute onset, with Enteroviral infection of 3-7 days. It occurs sporadically, as well as in epidemics, with over 64 on record.

CFS is defined in such a way that it requires all other illnesses or disease states be excluded before a diagnosis is given. ME must therefore be considered and excluded. They therefore cannot, are not, never have been and never will be the same illness.

This is also currently acknowledged on the CDC website. The CDC states that ME is not CFS. Therefore, any campaign for a name change will not see CFS changed to ME as you are suggesting to the media any more so than medical authorities would regard HIV as a substitute for MS.

If this is an attempt to represent the patient community as a whole, then care should be taken to ensure that the correct terminology is used and inaccuracies corrected.

 

[slayadragon]

This is a really tricky issue.

The question of "What disease is this?" is responsible for the language (which at first glance seems unnecessarily wordy) in the following paragraph:

>We, the undersigned, are individuals from around the world who suffer from the disease observed in an outbreak in the Lake Tahoe area in 1985. This illness was given the name Chronic Fatigue Syndrome in the U.S. in 1988, and is known by a variety of other names -- including Myalgic Encephalomyelitis -- in other countries.

Byron Hyde himself went to Lake Tahoe and stated that these individuals had ME.

Then the CDC used these individuals as the basis for the disease CFS, recognized in 1988.

Unfortunately, they gave CFS a weird definition. That has (in my opinion) succeeded brilliantly in confusing everyone and keeping patients busy arguing with one another about what CFS "really" is, thus distracting them from fighting to have the illness (whatever it's called) taken more seriously.

We have worked hard throughout the petition to make it clear that it is not coming from people who have the CDC's phony "fatigue" disease. It is coming from people who are ill with the serious disease of the Ramsay cohort (named ME) and of the Lake Tahoe cohort (named CFS and the basis for the WPI 2009 Science paper).

The descriptions in the next several paragraphs, and later on (e.g. in the paragraph about severely ill sufferers) make that particularly clear.

I don't have a lot of interest in what the disease is called, personally. I just want OUR DISEASE (whatever we call it) to be taken seriously.

ME is not an official disease in the U.S. CFS is an official disease, and it is based on an ME cohort, but the government has given it a misleading definition.

I can explain the preceding sentence to the media, because it's simple enough that they can understand it.

I can't explain to them the long explanation in the preceding post on this thread, or most of the other name discussions I read. They don't have time or interest in that.

Thanks for writing it down though. There will be in the media packet a document that discusses various names and definitions, and so all the input I can get will be helpful for that.

Best, Lisa

 

[SpecialK82]

Lisa et all,

thanks for starting this up, it's a great idea! You all have done some nice work and I would like to comment after I ponder it for a litte while. But one thing that does jump out at me immediately is the phrase stating the funding $$ allocated for other diseases and mentioning $428 M for depression. Comparing CFS to MS, lupus, etc is great, even hayfever to show a comparable $ comparison, but I don't think that we want to continually be compared to depression, it's already something that the media jumps on too quickly. Maybe put in Parkinson's instead?

Another thing to keep in mind, is that anything written in the petition should be supported by facts. If we are to be taken seriously by reporters we will have to be solid in what we say. I'm concerned the phrase about many PWC's dying "Many die young, frequently of cancer, heart disease or suicide" may not be proveable. I think we all believe it to be true and feel that it is reality, but can we give them very solid reports? I don't know of much that substantiates the claim.

My concern is, as soon we say something that is not proven, then we risk our entire credibilty on everything else that is said. We could shoot ourselves in the foot, and it may be better to write what we can strickly back-up.

thanks again.

 

[slayadragon]

Hi Special K,

I absolutely agree that we can only include in our materials things that we can back up. I've been really strict about that in the development of the materials so far, and will continue to be.

Below is a study done by Lenny Jason on the deaths. It's just one study, but I think it provides enough evidence for the sake of this petition.

That's a thought about the depression, but it would be wrong to change the petition at all now that lots of people (197 so far) have signed it.

Thanks so much for your comments!

Best, Lisa

*

Jason LA, Corradi K, Gress S, Williams S, Torres-Harding S. Causes of death among patients with chronic fatigue syndrome. Health Care Women Int. 2006 Aug;27(7):615-26. PMID: 16844674

The causes of death of a population of CFS patients was examined. The three most prevalent causes of death were heart failure, suicide, and cancer, which accounted for 59.6% of all deaths. The mean age of those who died from cancer and suicide was 47.8 and 39.3 years, respectively, which is considerably younger than those who died from cancer and suicide in the general population. The mean age of patients dying from heart failure (58.7 years), is significantly lower than the age of those dying from heart failure in the general US population (83.1 years).

 

[justinreilly]

hi Lisa,

thanks for doing this very important petition and related media work!! Had trouble linking to petition from here and from cfsuntied.com.

J

 

[slayadragon]

Hi Justin,

I changed the link above to the following. Would you check to see if it works for you?

http://www.change.org/petitions/upd...scientific-and-economic-climate-re-me-and-cfs

I tried getting on from Khaly's blog, and it worked fine. Maybe you might try that again as well?

Thanks much for the heads up.

Best, Lisa

 

[insearchof]

Hi Lisa


Lisa, I do understand where you are coming from and the difficulty associated with the task, but I am a stickler for verifiable facts.

ME is not officially acknowledged as a disease anywhere in the world that has adopted CFS..that I know of, not just in the USA. Just like the USA, it is CFS that is officially acknowledged here in Australia and the UK. It was somewhat different prior to 1988 .

Officially the fact is, that Lake Tahoe is not recognized as an ME outbreak. We know however, it was regarded as such by the international ME experts. Unfortunately, the only official and factual evidence on record of that outbreak links it to EBV, not ME.

Reporters who want to do a hatchett job of what you have written will counter you with the above. So why not own those facts but promote them in a way that tells the whole story and back story ( neglect, negligence etc) ? After all I do believe petitions usually start off with a summary. So why not write something along these lines:

>We, the undersigned, are individuals from around the world who are, or are believed to be suffering from, the disease known as Myalgic Encephalomyelitis, ["ME"] a neurological disease recognised by the World Health Organisation since 1969. [ICD G 93.3] CM 9 and10. ME causes damage to the central nervous system resulting in severe and prolonged physical and cognitive disability. Believed to be caused by an enteroviruses, ME is an infectious disease, with over 64 epidemics having been recorded across the world. The ME epidemic at Lake Tahoe Nevada, USA in 1985 was mistaken by the Center for Disease Control and Prevention, Atlanta, USA, [ "CDC"] for an outbreak of a mononucleosis illness. The CDC erroneously defined the illness and classified it as a syndrome, labeling it Chronic Fatigue Syndrome. The key criteria of this newly defined illness was identified as unremitting fatigue for a specified period. By way of contrast, Central Nervous System dysfunction is the key diagnostic criteria in ME. Chronic Fatigue Syndrome as defined and modified, has been strongly criticized for it's application in both a clinical and research setting. Primarily,it is so wide in its application that it catches many persons with a variety of illnesses, in which fatigue is only a mere symptom. Similarly, many patients today who suffer from ME are readily being diagnosed with Chronic Fatiuge Syndrome. . Graded Exercise Therapy, currently prescribed for Chronic Fatigue Syndrome, has been stated in medical literature to be contra indicated and perilous to the health of all patients afflicted with ME. ME patients require that these matters be duly acknowledged in order to secure appropriate medical care and research for this devastating neurological disease, lost in the classification of Chronic Fatigue Syndrome for over 20 years.

That's just a rough off the top of my head suggestion.

I think petitions generally open with a summary of the issues and the set out the petitioners requests. I think the above summarizes the position, historical events and outcomes, whilst presenting a full and balanced view.


Also, you might like to give some thought to changing the opening line and general tone from one of directing the media, to the more friendly one of inviting them to work with the ME community.

So you might like to say:

"We invite journalists to work with the ME community and assist us by adopting the following guidelines...."

ISO

 

[slayadragon]

I used to work as a reporter and also worked in media relations (a long time ago, pre-illness). Based on the U.S. journalists I've talked to about this project so far, these are my feelings.

1. The media does not have time to figure out the intricacies of the definition and name of this disease. They're not interested. Whatever we decide to tell them, it needs to be simple -- a couple of words. We can provide background on the name/definition stuff in a separate informational piece, but we shouldn't expect them to read it.

2. The media takes diseases that the government has recognized much more seriously than ones that it has not recognized. Saying that we have CFS, but that it's not a good name and has a misleading definition, is barely within what they can comprehend. Saying that we don't have CFS and that we do have a disease that's not recognized in the US (ME) is way beyond what they can deal with. It will shut them down entirely.

3. They will not take more than a couple of minutes to read the petition. If they get bogged down in language, they won't read it at all. It needs to be very easily comprehensible.

4. The vast majority of the media has no desire to do a hatchet job. They just want to quickly get up to speed on what they're writing about, so that they can do a fair and accurate job. Insofar as there are reporters who have the goal of harming us (and there may be one or two), nothing we can say is going to change their mind.

5. We put a note on the petition that it is related to U.S. CFS policies, not worldwide ones. It may not be helpful for international audiences, though people can use it if they like. Hopefully the other materials we are writing can be used (perhaps with alterations in the name) in other places.

6. We will make it very clear in the cover letter and other various materials that our goal is to help the press to cover this topic better. Here is a sample cover letter:

http://www.cfsuntied.com/mediaintrotoMECFS.html

7. Based on the conversations I've had with other people, the U.S. is key to changing how this disease is treated in the rest of the world. Influencing, say, the UK government directly is going to be extremely difficult. However, if the U.S. changes, other countries will follow. Thus, the order of business is: 1) change media coverage in the U.S. , 2) use the media coverage to prod U.S. government to change its attitudes and policies toward the disease, and 3) use the U.S. changes to get things changed in other countries.

Thus, the project is U.S.-centric. However, those from other parts of the world certainly are free to help with the project in whatever ways they like.

Another couple of comments:

The Tahoe epidemic was dismissed as an chronic mono outbreak, because not all the patients were EBV positive. This is why they had to come up with a new name.

I am particularly determined to change the coverage about the exercise therapy and am working on a plan to do that. It's covered to a substantial extent in the current petition, and will be a big part of the other materials we present to the press.

Thanks much for your comments.

Best, Lisa

 

[insearchof]

Hi Lisa,



1.If what you say is true regarding interest and attention span of journalists in the US, then I understand and I dare say you will need to do a lot more work to cut your existing petition down. I thought length was not an issue, because it looked long enough to me to start with, which is why I was not too concerned with the length of my drafting suggestion. But if what you say is correct, it needs to be much briefer.

2. understand vast majority do not want to do a hatchet job, but those that do, seem to get more press and linger longest in memory, which strategically speaking, would set you back.

3. As for the US policy change being adopted elsewhere, I understand why you would think that way, but Australia as a general rule when it comes to medical matters, follows the Commonwealth (UK) first and foremost, not the USA. I agree that changing the UK position will be extremely difficult.

4. Initially it was thought that lake Tahoe was mono. Agree with what you wrote, which is why I thought I used the term mono like illness, but may not have made that clear. But agree. All the same, when you talk about the media not accepting anything that is not officially recognized, I guess it would be pointless for you in the US to suggest that Lake Tahoe was ME, because there is no official recognition of that, so I am a little confused as to why you have mentioned it?


5. As this relates to US policy....and if it is US centric, as it appears to be, then it might be best that it be solely a US petition and not one purporting to represent ME patitents internationally.

As a non US ME patient I have to be honest and say that I have current concerns with it's wording, which I believe is likely to cause confusion and political issues for non US ME patients. The opening paragraph suggests that US CFS is ME and it is not. It also wrongly suggests that CFS in other parts of the world is known as ME when that is also incorrect. There are ME patients across the world, some in this forum ....that have never had a diagnosis of CFS and would not like to be reclassified as such, which is what might happen I'd you say that US CFS is really ME. As it is presently defined it is not, To say otherwise is a misrepresentation.

If you do not make the distinction clear in the petition, it might appear to the ME community that you are attempting a media campaign to promote and support the view that ME and CFS are the same illness and that will probably be met with some strong opposition by parts of the international ME community who might also feel compelled to engage in a similar exercise to the US based one outlined here.

ISO

 

[slayadragon]

Hi In Search Of,

The challenge in working on this project was that even though it seemed to us that people with "our disease" (which we seem to be able to define and discuss perfectly accurately with one another) are in almost perfect agreement about the issues to be addressed with the media, there is a divergence of opinion in terms of how the name and definition fiasco that the CDC purposely created in 1988 should be handled.

This is unfortunate. In my opinion, the CDC has accomplished its goal of confusing everyone and pitting those in our community against one another -- thus distracting us from the task of communicating how horrible our illness is to the world outside our community.

We spent a great deal of time trying to word the definition/name section in the petition as clearly and concisely as we could, in a way that we hoped would be acceptable to the vast majority of sufferers -- especially in the U.S., but also in the world as a whole.

Getting better coverage of the disease anywhere in the world will benefit us all.

Those of us on the team are more cognizant of the name and definition issues than just about anyone that I know, and asked other people who have strong opinions about the name as well.

We put a lot of time into thinking about how it might best be worded, and came up with a version that we thought was most suitable.

All of the things that you're bringing up here are ones that we've already discussed at length.

I'm happy to share our rationale, but this is what's on the petition already. We wouldn't be able to change it even if we wanted to, because more than 218 people (at last count) have already signed it. Changing the petition would mean erasing all of those signers, because it would be immoral/unethical/illegal to pretend that they'd signed something that they actually had not.

By all means, if people in other countries want to do their own media efforts -- including distributing their own petitions -- that would be great. Hopefully the work being done on this effort will be of help for that.

In the meantime, if people in other countries want to sign this petition, I encourage them to do so.

Here is the comment about that, which has been added to the petition site:

>**Note - this petition addresses U.S. politics surrounding ME and CFS....however, feel free to sign, no matter where you are!**

Best, Lisa

 

[insearchof]

Hi Lisa

I am sorry, but I completely missed the fact that this is now an active electronic petition. I would not expect you to change the wording but I am baffled as to why you entertained ideas here and in put from others including myself, when it was already live.

All the same, my concerns remain.

I think replicating an educational media approach such as your doing in the US and the petition are great ideas that I am certain will be taken up by other parts of the International ME community in order to address some of the matters I have raised.

ISO

 

[slayadragon]

This is a multifaceted media effort with a number of components. I'm interested in getting as many thoughts as possible from people, since they will inform other parts of that effort.

I had a discussion with some of the members of the our little team last night about the comments that you raised. We decided to make it more clear throughout that we were referring to the US situation, and to think about how we can change the other materials that we're developing to be of help to people in other countries who are facing many of the same issues that we in the US face.

So thanks for your thoughts!

For those interested, here is the address of the petition:

http://www.change.org/petitions/upd...and-economic-climate-re-me-and-cfs#signatures

Best, Lisa

 

[insearchof]

More thought food

Hi Lisa

In light of your explanation, you might also want to consider the following.

If your materials provided to the media fail to clearly and unambiguously state that the illnesses are separate, have vastly different definitions ( supported by different ICD classifications) but otherwise imply that they are the same...anywhere in the world, then a journalist who relies on your information and prints such, would be open to a challenge for breaching professional journalistic ethical codes and at least here and in the UK, can be challenged via relevant regulatory bodies.

Should this happen, your group would loose instant credibility as a reliable media source- at least here, the UK and other similar countries.

This might be something your group might also like to consider, because as you rightly pointed out in the begining of this thread, many within the community are no longer tolerant of the reporting of factual inaccuracies when it comes to ME and CFS, and are actively seeking new ways to redress this.

Just some more food for thought.

ISO