Blog: Beware of Aiding in the Burial of ME!

Andy

Andy

Retired committee member
Since the Lake Tahoe outbreak of the distinct neuroimmune disease myalgic encephalomyelitis (ME), the US Centers for Disease Control and Prevention (CDC) has extended all their efforts in minimizing, conflating, misbranding, wrongly defining the disease in an attempt to bury the facts and reality of this severely disabling chronic disease affecting an estimated million American men, women and children. The purpose of their malfeasance is to evade and deflect responsibility for this burdened pandemic.
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Organizations who claim to represent #pwME like SMCI and MEAction have banded together with the CDC to aid in legitimizing this bad definition which is overly broad and does not define ME.
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https://relatingtome.net/2018/05/17/beware-of-aiding-in-the-burial-of-me/
 
Dislike.

There are alternative interpretations for much of this stuff.

ME is not considered to be a distinct disease because the underlying pathology is still unknown. Of course many say they know what causes ME but they haven't succeeded in convincing the rest of the world. That's also why we have various case definitions. Again some claim they know which one the true ME case definition is (according to this author, it's the ICC). That's probably also why the the IOM report was comissioned: to get a document that is evidence based.
 
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It never ceases to amaze me how discriminatory/prescriptive some people like to be...I sometimes think these views would eventually have us all excluded. We need a biomarker and all this rubbish goes away.

Speaking as a person with ME, CFS or whatever you want to call it without enlarged lymph nodes...I’m also dogshit since I’m mild and also a man, oh and I was gradual onset and got my condition after they changed the name...so I’m just one of those people with something else other than the one true ME I guess ?
 
Patients at this time can't reliably determine the correct definition(s) of this disease(s). More funded biomedical research is the only way to untangle a mess that took decades to create.

In short, we need more biomedical research funding, better clinical care, and government recognition that this is a serious biomedical illness. No matter what you call it – ME, CFS, ME/CFS, CFS/ME or SEID.

I certainly don't agree with everything in the IOM/NAM report. But it drew a clear line in the sand that we are talking about a serious biomedical illness, not a psychological issue, and that substantially more medical research funding is needed.

The report also provides a clear path to diagnosis. To think that most US doctors today, with 15 minutes per patient, should instead diagnose using ICC or CCC, is not realistic. SEID may not be perfect, but it's a start towards diagnosing the 90% undiagnosed. Without diagnosis, appropriate clinical care is simply not possible.
 
Webdog said:
t's a start towards diagnosing the 90% undiagnosed.
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Also: the number of patients that can trace the onset of their illness to the lake Tahoe outbreak is probably just a few hundred or thousand.

Perhaps the reason this outbreak is not getting much attention from US health authorities is simply because the other cases are several thousand times more common. Assuming 1000 cases at lake Tahoe vs 0.8-2.5 million prevalence in the US.

Edit: this source says "an estimated 160 residents of Incline Village became ill with chronic fatigue syndrome (CFS) the winter of 1985" http://me-pedia.org/wiki/1984_Incline_Village_chronic_fatigue_syndrome_outbreak
 
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Wouldn't it be true to say that if we embraced Ramsay-ME only, that there wouldn't even be millions missing ? Some folks even saying thay post EBV CFS is not ME..

On the other hand, I understand that SEID is problematic, because it will inevitably select some patients with underlying psychiatric issues, and that may help perpetuate the idea that CFS is psychosomatic, because some patients given this label will recover in 'specialised clinics', etc..., but at the end of the day they also need help, don't they?

And even though 95% of what Wessely et al is saying is completely bogus, it may just be true for a small number of patients and who's to say that stress could not be contributing to their immune system and therefore exacerbate ME-like symptoms ? Newly diagnosed patients may not understand those things..

It's a very delicate matter and very hard because it's now more like a war between us and wesselys and it's not our fault..
 
In all likelihood we are a mixed patient group. The waters are so muddied that even if we assume CFS and ME are entirely different things, doctors have been using the terms interchangeably. So we might have ME patients diagnosed with CFS and CFS patients diagnosed with ME.

While I am happy to spend energy fighting and arguing against diluting our patient group further (such as MUS,FSS,BDS,BDD,PPS, etc) I really don't see the value in wasting valuable energy arguing with each other.

If we pool our resources and advocate together then subgroups should eventually become identifiable.

I think it's worth bearing in mind that not every person who has a diagnosed condition will have every symptom of that condition, though the majority probably should have core/key/mandatory symptoms. There will always be atypical patients though.
 
Blog posts like this often strike the tone that there’s a big silent majority in favour of this view.

From what I’ve read (social media, blog activity) it’s actually a very small but extremely vocal group who won’t stop going on about these things...which to me undermines activist effort elsewhere.

It’s so tedious to go round and round in circles when we have so much more to do than work out whose ME is more legitimate than someone else’s ME.
 
Dr Carrot said:
Blog posts like this often strike the tone that there’s a big silent majority in favour of this view.

From what I’ve read (social media, blog activity) it’s actually a very small but extremely vocal group who won’t stop going on about these things...which to me undermines activist effort elsewhere.

It’s so tedious to go round and round in circles when we have so much more to do than work out whose ME is more legitimate than someone else’s ME.
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It's really a religious argument. There are the true believers, and then there is everyone else.

A schism is not the way forward.
 
Pechius said:
On the other hand, I understand that SEID is problematic, because it will inevitably select some patients with underlying psychiatric issues
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This idea that SEID is a very broad case definition akin to Oxford criteria is promoted by people much like the current author and I think they are jumping to conclusions and using poor methodology. SEID more than other criteria depends on how PEM is defined and assessed in practice. They're doing this because they're hoping that it will lead to their preferred case definition being used instead.

For example L. Jason published a paper claiming SEID criteria have a high risk of conflating depression with SEID, but the way operationalized PEM for SEID criteria was something along the lines of feeling more tired after exercise, which is NOT an accurate summary of how PEM is described in the IOM report (don't remember the details due to poor memory, but it was flawed). I understand that Jason has been working on his own case definition and that there is some rivalry going on. Jason also claimed that the ICC leads to patients with psychiatric disorders being misdiagnosed with ME (due to including too many symptoms).
 
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strategist said:
This idea that SEID is a very broad case definition akin to Oxford criteria is promoted by people much like the current author and I think they are jumping to conclusions and using poor methodology. SEID more than other criteria depends on how PEM is defined and assessed in practice..
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With some basic training, doctors should be able to fairly easily distinguish SEID from depression. What's missing so far is the training.
 
strategist said:
This idea that SEID is a very broad case definition akin to Oxford criteria is promoted by people much like the current author and I think they are jumping to conclusions and using poor methodology. SEID more than other criteria depends on how PEM is defined and assessed in practice. They're doing this because they're hoping that it will lead to their preferred case definition being used instead.

For example L. Jason published a paper claiming SEID criteria have a high risk of conflating depression with SEID, but the way operationalized PEM for SEID criteria was something along the lines of feeling more tired after exercise, which is NOT an accurate summary of how PEM is described in the IOM report (don't remember the details due to poor memory, but it was flawed). I understand that Jason has been working on his own case definition and that there is some rivalry going on. Jason also claimed that the ICC leads to patients with psychiatric disorders being misdiagnosed with ME (due to including too many symptoms).
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Agreed. I read Jason's interview and seen the study and I don't agree with him on many points. If PEM was defined and understood correctly, there pretty much wouldn't be a need for anything else, except common symptoms like exhaustion, muscle weakness, etc..
I actually checked out the questionnaire that Jason used to asess depression and I think many adolescents could easily score positive because of reactive depression, and as we know very well, a lot of symptoms of depression and CFS overlap, except for specific symptoms like self blame, suicidal ideation, no purpose, etc. So I don't even think that current questionnaires are a good way to check if people with WEID have depression or not unless they only include the most specific symptoms of depression.
 
Dr Carrot said:
Blog posts like this often strike the tone that there’s a big silent majority in favour of this view.

From what I’ve read (social media, blog activity) it’s actually a very small but extremely vocal group who won’t stop going on about these things...which to me undermines activist effort elsewhere.

It’s so tedious to go round and round in circles when we have so much more to do than work out whose ME is more legitimate than someone else’s ME.
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Oh my God so well said. The negativity this week on forums by a minority was head wrecking and they are very vocal....the trouble is they sow seeds of doubt. Also as more signatures are needed for the Senate resolution to be passed, we all need to stick together. But no, nothing is simple in the bizarre world of ME/CFS!!
 
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