A testimony by Jill Mclaughlin to the CFSAC

My name is Jill McLaughlin. I have been involved in advocacy  for 15 years and have worked with many patient
groups and organizations.

I would like to address the ongoing issue of diagnosis and terminology. This is a CFS committee, yet has included ME and ME/CFS.

However, ME patients do NOT want their illness to be called CFS or changed to ME/CFS.

These CFS / CFIDS / “ME/CFS” groups continue to promote the association, ostensibly to make CFS sound more serious.


These groups have no right or mandate to represent or speak for ME patients, even though they may claim to, and collectively have too few members to presume such a thing.

ME is a stand alone dx. We do not need two names. ME is a neurological illness based on CNS dysfunction. Fatigue has no more to do with ME than it does with AIDS, MS or cancer.

ME is a testable dx of inclusion, with signs and objectively measurable pathology. CFS is an unexplained, un-testable, heterogeneous dx of exclusion. Not the same.

Contrary to widespread misinformation, the Canadian ME/CFS definition  is not an ME definition. It was published a decade ago in a journal that no longer exists. The authors of the Canadian ME/CFS definition have abandoned it in favor of the ME-ICC.

The ME-ICC were written by an independent group of doctors and scientists, who, collectively, have 400 combined years of clinical and research experience, and have diagnosed or treated approximately 50 thousand patients.

The ME-ICC specifically rejects labeling ME as CFS or ME/CFS, and clearly spells out that the objective is to split ME from CFS.


They aren’t talking about subgroups, but DISTINCT separation.

This was based on scientific consensus using the delphi process, not personal preferences or political consensus based on beliefs or opinions of a narrow group,  which currently seems to be the case.

The CDC multisite study will not clarify or solve problems of identifying or defining ME and CFS. This study fails to use structured clinical interviews in order to exclude psych disorders.

Sites chosen are mainly run by CFS doctors and even Fatigue clinics. With no case definitions, there are those who ascribe to the mixed ME/CFS paradigm, reducing it to merely semantics.  It should not be up to a narrow, select group  to subjectively decide.

Without specific case definitions to ensure that the same, uniform cohorts are used, data are flawed and results are meaningless.
There is often myopic discussion about  which definition is best, but no one definition fits different illnesses.

Even using a certain term cannot ensure that we know what illness or patients are being identified, due to the conflation and combining of terms and diagnoses: ME is called CFS; CFS is called ME. And ME/CFS is up for grabs (no WHO recognition, ICD code or established case definition).

Consequently, we may have so called ME studies that contain no actual ME patients. Would MS patients allow studies to publish on MS that contained no MS patients?

From the translational aspect, it is clear that CFS research does not apply to or help ME patients,  and vice versa.

It is unacceptable and the opposite of WHO convention to allow the broad, heterogeneous  CFS as the main ICD tabular entry, with historically defined ME demoted to a mere synonym, despite the fact that ME is the correct medical terminology for the disease as recognized by the WHO since 1969,  while CFS,  the political lay term,  was added to the alphabetical index ONLY in 1992.

Redefining ME/CFS is a syllogism, as there is really no such recognized diagnostic entity.  Evidence based methodology will not work, as the evidence base is polluted with all these mixed, mislabeled studies with dubious or conflicting results.

There is no need to make up another mixed and potentially watered down ME/CFS definition, and then talk about subgroups for the next 20 years.

The last time that HHS was involved in defining an illness, we all know how well that turned out.

ME patients have been neglected under the broad CFS umbrella for far too long.

ME patients need an accurate diagnosis and appropriate research done on true ME patients, not incorporated with or compared to CFS.

Comments

  1. thank you so much Jill! You were able to say what I've been trying to say for nearly 2 years (every chance I get)...BUT you have 15 years experience as an advocate behind you and the strong conviction of scientific knowledge behind your words. I only know that many people saying the same WRONG thing does NOT make it right! - and many people in positions of power making the WRONG choices - such as choosing to implement the WRONG criteria (in this case, the IACFSME PRIMER)- will do NOTHING to move the study, testing and treatment of the disease ME...forward!
    This was the 'statement' I made yesterday on FaceBook:

    'The letter sent by patient orgs to sec. sibellius et al asks them to adopt the 'CCC NOW, and work to improve it'. This was ALREADY DONE! in 2011, via the much ignored ME ICC! The ICC states that it 'ADVANCES the successful strategy of the CCC of grouping coordinated patterns of symptom clusters that identify areas of pathology.' The ME ICC & PRIMER is NOT asking us to promote and advocate for it, IN ADDITION TO the CCC. It is offering us a scientific way of moving BEYOND the CCC. This is an important distinction, and an opportunity that once lost, we will regret. If we are going to ask those in power to accept a NEW criteria - 'to bring forward movement in enhancing clarity and consistency of diagnosis and treatment of ME, internationally' - we MUST follow through in being consistent in what we are asking for (regardless of the reluctance on their part to accept this brazen' leap, or their refusal to acknowledge it!). Chaos and confusion will continue to dominate the frightening landscape of ME, if this step is bypassed.

    Again, I thank Jill for sending her statement to the CFSAC committee (I didn't, as I figured they wouldn't listen to me anyway! Though I am a veteran about the disease ME, I have a lot to learn about advocacy for ME. There may be 'Goliaths'...but there are plenty of 'Davids' too) - Jackie Nance

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  2. Thank you for makng this comment Jackie - you raise very important issues. As you say the need is for consistency and follow up. It is so important for everyone to speak up - the trouble is too many people are willing to compromise, do not perceive the dangers - and are not speaking clearly or loudly enough. They seemingly do not see the harm they are doing - this includes, sadly, some of our major representatives. Thanks again Jackie.

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  3. When I was first diagnosed with ME, I did everything I could to avoid speaking its name because of the misconceptions I had previously held based on the media portrayal of ME as psychosomatic. It took me years to realise that by not being open about my condition and the very real symptoms the more I was perpetuating other people's misconceptions. Originally I assumed people's dislike of the name CFS was just the inadequacy of the word fatigue - what difference does a name make if the symptoms are tha same? The more I have learned about the difference though the more I realise how important the distinction is. Now I refuse to use any name other than ME, no matter what doctors insist on calling it and especially on my blog where many of my commenters continue to call it CFS.

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    Replies
    1. This is a wonderful, clear explanation about why it is so important to use the correct name. Thank you so much !

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