I just don't get it !


Why we should not use the term CFS and why we all need to challenge its use and stop being complacent about it.

To me its a life and death matter. If you don't wake up and open your eyes to what is going on in the UK, we will never get proper medical treatment and health respect for people with Myalgic Encephalomyelitis (ME). 

 People will continue to take their own lives from sheer medical neglect and people will continue to deteriorate and die from wrong or no treatment.

It seems to me that there is almost total confusion surrounding the illness ME because of the use of the term CFS. Some people may have been diagnosed as CFS, others as CFS/ME, others as ME or ME/CFS. 

Some will have self -diagnosed themselves, others will have seen a GP, some will have gone to a CFS clinic and some if they have been ill long enough may have seen one of the few knowledgeable , who, I would term as 'old school ' ME consultants who knew or knew of Ramsay and hopefully have been properly diagnosed.

The issue of what label you use to define your illness really matters. Too many people do not seem to realise why it is so important, why all the time they accept the term CFS as a valid term for ME they are actually aiding the psychiatric lobby , who have done such harm to the proper medical treatment of very physically ill ME sufferers.

 Anyone who uses the term CFS or CFS/ME is accepting a wide definition that may or may not accurately diagnose people with ME. 

Do not assume that ME and CFS are equivalent. For some people and some doctors and practitioners they may use the term CFS to mean neurological ME, but they may equally use it to mean a psychiatric fatigue condition or just see it as a tired all the time syndrome with few symptoms, rather than realise its true nature and neurological dysfunction.

In the CFS-diagnosed population you will have 3 categories of people- CF people, ME people and people with other wrongly diagnosed or inadequately tested for illnesses. No one then is served by this diagnosis.

The patient with mental health Chronic fatigue needs appropriate psychiatric support. The person with some other fatiguing illness needs proper investigation and testing, they may even be able to get well with appropriate treatment. The person with ME is certainly not benefitting from the CFS label because they will be given a fatigue regime consisting of therapy and at best symptom management , with possibly secondary diagnosis for what would be considered a co- morbid illness. They will not get their illness properly tested with ME specific tests, scans that actually show up their dysfunction, treatments that may treat their underlying illness, regular monitoring, neurological support services, a wholistic aware approach. 

They will not have a clear or full picture of what is going wrong physically in their body. They will either be offered CBT, GET, pacing and maybe given pain killers, anti- depressants, sleeping pills and/ or left to get on with it by themselves.

Most genuine severely ill ME patients will probably have fallen off the radar altogether because their health needs are simply not being provided for and what is on offer will potentially if not actually harm them. Many people are left to their GP but the GP does not necessarily know what to offer the genuine ME patients, even if they can recognise them. 

The initial guidance available in UK is the flawed inadequate NICE guidelines, there are few knowledgeable practitioners for people with ME to turn to. Most require a lot of money which people ill for years, relying on benefits, struggle to afford or offer their services for free out of genuine compassion and commitment to patients. The late Betty Dowsett was one of these people who ran a free clinic and worked tirelessly to properly diagnose patients.

Virtually nowadays everyone, consultants and practitioners , it seems, uses the misconceived term Fatigue, even those with some medical background may not be knowledgeable to safely offer or suggest treatments. Many are compromised because they have bought in to the fatigue market and neither have they challenged the psychiatric paradigm or the inadequate diagnostic criteria currently being used.

The problem is that not everyone who uses the term CFS or CF or CFS/ME or even the proper name ME can be certain whether they actually have ME, because good accurate diagnosis is primarily concerned with appropriate and accurate criteria and how many can honestly say that they have had adequate diagnostic criteria applied to their illness? 

 How many can actually be bothered to identify or recognise their own neurological symptoms? 

How many people are actually predominantly just 'tired all the time' ? 

How many are so cognitively compromised that the effort to get clarity is too much for them?

 How many feel too ill to deal with it all? 

How many have been abused already and negated, lack confidence or feel frightened? 

How many rightly lack trust in a system that is currently failing them? 

How many have already been harmed? For how many is the risk or effort too great?

I have no idea, but I do know that not enough people are speaking up, complaining, refusing to accept it, challenging ill defined labels and poor diagnostic criteria, wrong inadequate or dangerous therapies charading as treatments and too many are being complacent in accepting the dearth of proper tests offered them or the scans that would potentially show up their dysfunction? Why? I do not understand it. 

I know illness makes it hard, is exhausting, distressing, complicated. I know that speaking out can make you afraid, but all the time we do not collectively make ourselves heard for the truth of our illness,we will collectively continue to be offered poor inadequate biopsychosocial pathways rather than proper investigative medical testing and treatments. For me, ill as I am , this is unacceptable. Why isn't everyone speaking out? 

Why is it left to a few? Is it fear or something else? Is it that many don't actually have ME? 

Are people really just tired and helped by the CFS clinics? Do people just have no vision ? Or do they not understand what is happening? 

Are they unaware that so much more could and should be offered?

I cannot bear the untruth and misinformation surrounding my illness. But worse I cannot bear the people who say they have ME yet who support the fatigue clinics, who do not insist there is a better medical pathway for ME . Are they happy, comfortable , okay with being ill or even with no hope and no help to improve, heal, find out and know what is going on in their bodies? I just don't get it. 

Why does anyone feel happy using the term fatigue for their severe neurological dysfunction? What can that mean? I wish I understood.

For me the issue is critical. I am not just ill and isolated , I am in agony and tormented by every normal event, noise, interaction. My health, my life, depends on accurate diagnosis, on proper medical investigation and testing. I need to know what is going wrong in my body. I need to understand it. I need to feel safe. I need to know if I need treatment I will not be misunderstood or endangered. I need the underlying physiological dysfunction to be addressed not ignored . 

 I need to know that when I say I have ME it is correct. I would also like to know when other people say they have ME, that they actually have it too, because currently there are such poor criteria used generally that people are being wrongly and poorly diagnosed. Yet it seems that anyone and everyone can have an opinion about ME services , but are they genuinely representing the illness that I actually have?

All the time that the focus is on a vague fatigue symptom whilst post- exertional malaise and neurological symptoms are ignored and all the time that any other serious symptom is considered only as a co- morbid illness rather than looking at ME as a whole disease with multi- system dysfunction, there will, in my opinion continue to be confusion, neglect, misinformation, misrepresentation and constant infighting between people with opposing needs , all thinking they have ME, when they may not all have it.

We need to universally ask for the ICC Criteria and Primer to be respected, used and proper clinical pathways set up to investigate and aim to treat the illness. It is simply not there yet and I fear it will never be all the time people accept the use of the label CFS, with its open interpretation and all its dangerous implications, including the use of therapeutic technique to charade as a treatment, all the time denying the need or possibility of real medical investigation and physical treatment and all the time that people do not challenge the misuse of poor wide diagnostic criteria.

Wake up now or another generation will be lost to psychosocial mistreatment and the term ME may disappear for ever eventually and all the people with ME continue to be neglected and disappeared too. See how many people are compromising your life away and say 'No more!'

It is not just about the label. It is about proper diagnosis and proper symptom identification, underpinned by appropriate investigative medical tests. It is ultimately about your life your health and whether you will get adequate medical support and recognition for how very seriously ill you are with ME and whether you will actually know what is wrong with you and whether any treatment or medical support is possible. 

Surely that is worth speaking up for? Don't rely on others. They may not represent you. Do it yourself and do it now, however difficult , however long it takes, resolve to get proper biomedical help, resolve to challenge the fatigue lobby with the truth.

Comments

  1. i am totally with you, greg. i don't get patients saying that they don't care what the illness is called "as long as we get proper treatment and research" because we don't get proper treatment nor research because of the ridiculous chronic fatigue name. by kidding ourselves we are supporting out own abuse.

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    1. ...yes, that is very well put !Absolutely the irony of ME is that some patients actively support "their own abuse".

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  2. I agree completely that CFS is a patronizing name and a source of problems. I also agree that the research cohorts include many people who do not have our disease.

    However I do not think the name is the primary issue driving the poor treatment we get. This began very early on while the disease was still called myalgic encephalomyelitis before CDC was ever involved.

    This problem is systemic to medicine - if the patient or disease is too complex, the default answer is that this is a personal problem of the patient (or patient's family). Exhibits A-F: Asthma, epilepsy, rheumatoid arthritis, gastric ulcers, multiple sclerosis, Parkinson's. All initially treated as stress, emotional problems, hysteria, and the like.

    I think the bigger problem is that there is no board-certified specialty which has claimed the disease.

    Changing the name would be a good thing, but I don't think it's the end game. I also don't think it's fair to accuse patients of collusion with the enemy for using the 'wrong' name. There are a variety of reasons to use this or that name or hybrid in various contexts. There are definitely times when it is strategic to say "ME" or even "ME/CFS" rather than simply "CFS" (or the long forms of any of those) and patients are doing this more and more, which is encouraging.

    But in the end I believe it is more to the point to
    1) raise money for good research
    2) write reasoned letters and such to counter the bad logic and poor methods of the (bio)psychosocial school
    3) do everything else we can think of to encourage sound research methods - including better inclusion criteria
    4) raise awareness of the biomedical findings and severity of the disease and the poor quality of life of those who have it (in a way which comes across as informative and touching, but not complaining)

    all the best,
    Janelle

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    1. Thanks Janelle, you are right, the name is not the primary reason driving the heart rending lack of treatment- how much of this can my wife bear ??

      Yes traditionally complex illnesses are ascribed, as you say, to a personal problem in the patient.

      ME, I think, though is unique in how the perception of it being a mental rather than a physical illness has been so deliberately engineered and manipulated by the Medical Insurance and Chemical Industries : who have vast financial and media resources at their disposal.

      People with ME have only their voice to speak up and their power to take back : that is why it the name change issue is so important.

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  3. There is a problem with the US (isn't there always). We have never officially used the term ME; it's been postviral fatigue syndrome or epidemic neuromyesthenia, or a host of other names - but never ME. So we have to build on literature on CFS. It's become quite problematic. Most of us diagnosed with CFS would much prefer to be diagnosed with ME & indeed most of us diagnosed with CFS probably have ME; but as much as I hate it, we have to follow a process. Since the Oxford definition essentially made the term CFS meaningless, and since the diligent scientists are proving with the ill named "Evidence Based Medicine" that CBT & GET cures CFS, you in the UK have every reason to let CFS = CF making certain that your diagnosis of ME remains. But we cannot do that till the name ME means something here - which it is beginning to. It's about as bad as it gets, unless there is a scientific breakthrough which makes it possible to distinguish ME from anything else. Lipkin used very carefully screened blood for his recent study. That study might be leading to others, to be leading to still more. Getting CFS away from the CDC is as tough as wresting it from the loyal psychiatrists.

    Cheers

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    1. Jean you right, but it will never happen unless people speak up more. In my experience here in the UK, it's taken me almost 20 years to get anything remotely approaching a medical service for Linda, but I have been relatively successful, perhaps more than most.

      That, I believe, is because I focused not so much on wider issues but upon one person, my wife, and I have gone to the very top, to be heard.

      All those issues around CFS will evaporate overnight , if enough people said "no MORE" ! I take my inspiration from the Civil Rights movement in the US - especially from Roas Parks.

      Also I take it from the Learning Difficulty movement here in the UK. It was only by people with a Learning Difficulty demanding to be called "people first" that the dreadful term : "Mental Handicap" was done away with back in the 1980's - which was a real achievement given that until recently people were called Mongol, High Grade, Moron, Low Grade, Defective.#

      Linda and I sometimes feel as if we are the only ones speaking out - of course we are not - but it is hardly a deafening shout resounding around the world.

      Thanks Jean.

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  4. Having been diagnosed in the 1980's in Holland with ME, which was than a fully legit illness, I fully agree with you Greg. I have moved to the US in the hope on better treatment options but that did not materialized and am now in the 25% group. I have been a bit of a coward and I vow to change that from now on and speak up. There was a time I was an active advocate but in every ME patient's life comes a time you can only advocate for your self and not the larger group any longer. I've been a coward by not speaking up about the CFS name, I never use it for myself but when it came to others in a conversation or discussion I adjusted. The few times I did speak up I was bullied by fellow patients, labeled as difficult and should accept the CFS/ME name for the greater good of advocay in the US. I did not fight them, too little energy and it caused too much stress. I never expected that level of bullying among patients, I expected solidarity. I will speak up from now on, I will post links to your blogs and will make people aware.

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    1. Bless you Tink; don't be hard on yourself. It is horrendous having ME, it is incredibly stressful and can easily make your symptoms worse, trying to speak up. That is what is so cruel.

      You raise many important points.Linda and I totally agree that there comes a time when "you can only advocate for yourself and not the larger group any longer " Yes, yes !!

      The hardest thing I have ever done is try and work with ME Groups. What is it about the "ME" movement that bullies, criticises, labels as difficult - as you so well point out - those who dare to raise their head up, take a stand, try and do something ?

      I see this happening time and time again. We have got to the stage where we have little time for the wider ME movement; we are not convinced that many of those who profess to be speaking up for ME, who are involved in advocacy, have actually got it, or have a clue - if they had real ME they would not be pushing to link CFS with ME. They would never use the despicable term CFS, that humiliating badge of shame .

      Those who suffer are far too focused, far too aware, far too ill, to want anything but a proper medical service; they are far too angry to ever compromise ; there is no compromise in ME.

      "When I tell the truth, it is not for the sake of convincing those who do not know it, but for the sake of defending those that do."
      - William Blake

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    2. Greg is right, Tink! Don't be too hard on yourself. We do what we can when we can.

      The bullying can happen on both sides of the issue. It's a fine line between compromising and keeping the peace (because we have no energy to waste) vs. becoming ineffective and playing into the Wessely school's hands (unintentional as it may be).

      For myself, I try to be disciplined about using "ME" (because that's what I have) instead of CFS without coming down hard on people who don't because many of them haven't even given the issue a thought. they are just trying to hang in. this is why education on the issue is so crucial and i am grateful to greg for having taken this up.

      i have a harder time with people who are consciously using CFS, however, arguing that it does no harm because, in my opinion at least, it does harm. but even with them, i try to remember that they may have just decided that they don't have the energy to fight this battle and rather spend their limited resources elsewhere. it's ok to disagree as long as both sides are allowed to disagree.

      just one example of how the slave name hurts us: when president obama was asked, at a town hall meeting last year, to increase funding for chronic fatigue syndrome it's hard not to imagine that, at least for a second, he thought, "whatever! i sleep 4 hours every night if i am lucky. i am constantly tired. how bad can this disease be?" after all, he knew nothing about this disease. all he got was the name. would he have put more energy into following up on this had he been confronted with a more serious-sounding name? maybe not because he's got a lot on his plate. but he might have. why not maximize our chances?

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  5. Allied NATO government is hiding HIV-Negative AIDS cases (like mine) under the "Chronic Fatigue Syndrome (CFS)" ICD-code.

    Why isn't CFIDS a *reportable* illness overseen by our public health department? Why are CFS and ME (i.e., the same exact disorder) suspiciously categorized as two separate illnesses on a worldwide level (i.e., by ICD codes)? Doesn't anyone else but me, very clearly see, the catastrophic cover-up going on here?

    Why are we not reading about NON-HIV AIDS cases (and/or the AIDS-like nature of CFIDS) on the front pages of every newspaper in the world? And if CFS and ME are NON-HIV AIDS, then, depending on who you believe, there are anywhere between 500,000 - 28,000,000 Americans (just Americans) out there with a transmissible illness. If that is what it truly is, our new form of AIDS dwarfs the ‘original’ AIDS epidemic ---> TENFOLD.

    I am not afraid to say that I have AIDS (without HIV). I am equally as unafraid of saying the most obvious thing about CFS & ME: IT SURE DOES LOOK LIKE AIDS TO ME.

    If it takes courage to think and to say the things that I do, I hope that there will be a miraculous outbreak of bravery from coast-to-coast, and across-the-pond.

    I stopped fighting for myself a long, long time ago. I fight for humanity!

    To learn more about NON-HIV AIDS, please visit:

    www.cfsstraighttalk.blogspot.com

    (or simply google "non hiv aids")


    Join me on Facebook: HIV-Negative AIDS?


    My federal testimony about NON HIV AIDS from the recent CFS/ME advisory committee meeting (Washington, DC) recently posted (5 min):

    www.youtube.com/watch?v=ubjGm5dILpY&list=PL600CB038194B4593&index=11&feature=plpp_video

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    1. I have just visited your wonderful site - and found this great piece :

      “A medical cover-up? GASP! Surely neither the government nor our trusted doctors and pharmaceutical companies would never cover-up the truth regarding a contagious disease - right? Wrong.

      Many believe that HIV-Negative AIDS cases falsely reported and treated as Chronic Fatigue Syndrome cases may be one of the biggest cover-ups we have seen."

      Thank you , for this, for your bravery, for your incredible challenging thought provoking work.

      One of my most treasured references is "And the Band Played On" that heart breaking history of the AIDS movement by Randy Shilts. I find this passge so poignant :

      "What hadn't changed for Cleve was the dream itself; what they had fought for, what Harvey Milk had dies for, was fundamentally right, Cleve thought .It had been a fight for acceptance and equality, against ignorance and fear. It was that fight that brought Cleve to Washington on this day.

      The numbers of AIDS cases measured the shame of the nation he believed. The United States, the one nation with the knowledge, the resources and the institutions to respond to the epidemic had failed. And it had failed because of ignorance and fear, prejudice and rejection. The story of the AIDS epidemic was that simple, Cleve felt; it was a story of bigotry and what it could do to a nation.

      The legacy of the nation's shame could be read in the faces that Cleve always carried in his memory, the faces of the dead. Cleve could see those faces now as he led the chant at the wrought iron gates of the White House. "Shame. Shame. Shame." Tears streamed down his face as he raised his fist towards the Oval Office. He saw Simon Guzman and Bobbi Campbell, Gerry Walsh and Felix Velarde-Munoz. And of course, he saw Bill Kraus." (p601)

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  6. I find the whole CFS & ME renaming discussion a nightmare, going nowhere.

    I have CFS, not ME. I do meet the ICC for ME (+ a whole lot more). My preference is NON HIV AIDS.

    I hate when ME'ers lump me (a CFS'er) in with them. Its not like ME'ers get treated any better than CFS'ers, so what's the benefit of them being conjoined? I can't just wake-up and decide to steal a MS diagnosis, just like I cannot steal a ME diagnosis. It is a disservice to us all. So, I support you 100%.

    But, honestly, I think it's too late to be "separating" them on a macro level; The "CFS/ME," "ME/CFS" *MACHINE* gets worse by the day....Most patients are just sheep, who follow.

    I support non-conformity and taking-a-stand, but as Einstein once said: "Insanity is doing the same thing over and over again, and expecting different results."

    If you want something changed, you need to stop trying to "work with" the government and its agencies (and the *patient* groups who claim they represent you. None of them represent me.). Accept that they are the root of the problem.

    We need to just stream-roll over them. "THE PEOPLE UNITED WILL NEVER BE DEFEATED." I agree with being as radical as possible. ;)

    Heterosexual, white people w/ CFS & ME are a pretty naive bunch, and are privledged (I include myself). We have no experience dealing with oppession and keep turning back to the government for help....following their govt-funded *science* (an oxymoron). It took me years to finally stop asking gov't for help (I did get a fair amount out of them, first), and I am still trying to educate myself on being 'radical' and 'civilly disobedient' (which doesn't come natural).

    Our allied NATO government already knows the causes (and cures) of CFS & ME.....do you really think that they don't?

    We live in the wealthiest, most prosperous countries in the world. Are people really that naive to think that they don't know? They know.

    The biggest issue I have with most ME advocates is that they keep trying to tell CFS'ers that they are "misdiagnosed"; It irks me to no end.

    I am NOT misdiagnosed with "CFS." I am MINDFULLY diagnosed with CFS. Even my doctors acknowledge that it is a crock of s#it.

    I say abandoned both "CFS" & "ME." The whole discussion has become a distraction.

    Pretty much everyone knows that I want the entire CFS/ME paradigm renamed "NON HIV AIDS" (i.e., because it is what it is), but if people cannot overcome their fear of stigmata, then I think we should scrap "CFS" & "ME" and start calling our illnesses either:

    1) low NK cell disease*, or
    2) A.D.O.N.I.S.**


    * From what I understand, it is/was called "low NK cell disease" in Japan. From what I was told, the underutilized (perhaps defunct) ICD-code still exists. It would just need to be resurrected.

    ** ADONIS = Adult Onset Immunodeficiency Syndrome. Credit for the idea goes to here: http://crofsblogs.typepad.com/h5n1/adult-onset-immunodeficiency-syndrome/

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    1. Brilliant !

      Talking of Einstein - he's been an inspiration to Linda and I for years, it's a long story but I think one of his quotes even led to us getting married..! Something to with the only source of knowledge being experience..

      Anyway, I love this quote of his:

      "Any intelligent fool can make things bigger, more complex, and more violent. It takes a touch of genius -- and a lot of courage -- to move in the opposite direction."

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  7. If we want ME to be acknowledged then imagine the effect it will have on the medical profession if, every ME patient or their carer around the world,would take on the responsibility for distributing the International Consensus Primer to their practitioners.ICC Primer is at;http://www.hetalternatief.org/ICC%20primer%202012.pdf
    We need a united approach, with different and more effective strategies to convince doctors to accept and implement the ME guidelines in their daily clinical practice.
    What are we waiting for!

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    1. Yes, yes; good for you !!

      The day it came out, I emailed the primer to our local Health Provider. It offers the best hope we have currently got of a proper medical service for people with ME.

      As you say : what are we waiting for ?? Thank you so much Priscilla .

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    ReplyDelete

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