Not Joni – Jack from www.facebook.com/may12th.awareness

ME as defined in CCC and ICC is clearly not a psych illness. If the US gov puts its money behind it instead of wasting it on a new name, we’ll quickly get some research out there to further prove it and discredited any existing psych reports. Then the psych groups won’t be able to argue its a psych illness. There is so much promising research that just needs funding for larger samples it shouldn’t take long to get a biomarker. Eg EEG testing that shows it vs depression, epigenetics, Stevens/Snell. I’m too sick to follow it all but there was lots discussed at the IACFSME conferences.

@maytwelfth,

P.S Joni is that you?

That is a good argument.

Except the psych lobby in Europe and the States have occupied ME or CFS for the past 20 years. What makes you think the situation will change or you are doing anything different than advocates have done already for the past 20 years. As I said before, if “they” want to, they have the power and the finance to play this game indefinitely.

I like to see what they do next with this SEID criteria for MD’S and the classification, if for no other reason tha out of curiosity.

Personally I don’t care much anymore about the name or classification or criteria. I have promised some children I will figure it out and I have only one thing on my mind: understand the science (study) and see to it that the right research gets done. I am working on it.

Take care
A.

Now is not the time for a new name and ICD code.

“Studies show that it takes an average of 17 years to implement clinical research results in daily practice” (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC130085/). By implementing SEID we start the clock over again. At least ME has been around for a long time and the CCC since 2003. We also have the risk they will do this to us again 5 years from now which starts the clock over again. It also takes years to get an ICD code.

It will cost huge sums of money and time to rollout SEID. Time and money that would be better spent on research and solutions. We’ve been badly underfunded for years. Where are we even going to get the money for a rollout never mind additional funds for research?

Where is the cost/benefit analysis to support going to a new name and ICD code? I’ve yet to hear of one existing. I bet if it was done it would clearly show this is not in the best interest of the patients.

We have international consensus from our experts that CCC and ME and WHO ICD G93.3 will work. SEID is US only. We need international consensus if we are to solve this beast.

P.S. Although I prefer the ME ICC for Medical Practitioners, it is no way perfect and makes some pretty questionable statements — such as the neurological findings which have to my knowledge never been confirmed in repeated large scale studies. But even if is some of those findings are confirmed, such as grey and white matter reduction, this does not make ME a primary neurological disease. The scenario can be compared with LYME, where you find neurological complications, but it is still a infectious disease and should be researched and treated as such.

Jan,

The test you quote have NOT been confirmed by repeated research. The papers you quote are nothing but theories by doctors which also have not been confirmed and quiet frankly outdated.

Until now I have not seen any confirmed large scale research/data that there is in fact significant neurological damage to be found in patients with ME/CFS.

I fit the ME ICC completely and have the “luxury” to have another family member also with the EXACT same symptoms. I have combined 40 years experience with this disease. I had several MRI, SPECT and CT brain scans. NONE showed any significant abnormalities.

I have therefore personally not seen any data which would justify ME seeing a neurologist or any signs which would indicate that an neurologist could help me.

I also have tested myself for various infections and can confirm that I have, had the same opportunistic infections you find in AIDS, again and again.

I can also confirm a Rheumatic co-morbid conditions which one finds in AIDS.

I also have tested some immune markers and can confirm some, others are still pending.

These are FACT’S I can provide proof for — not hypothesis or theories.

Additionally I have read and studied the immune markers intensely, — I do understand the research presented in context.

The immune abnormalities have been now confirmed by several teams over the globe and they prove without a shadow of a doubt that our immune system is fighting and impaired.

I am going even one step further: combined with my understanding of this disease, the immune and other research I studied, the fact that mothers have one or several children also sick proves to me beyond a shadow of doubt that we are dealing with a chronic infection.

But I am not excluding that the central nervous system is somehow affected by a pathogen.

Regards Anushka

Anushka, there is ample evidence of neurological issues in ME. There are symptoms beyond cognitive dysfunction and hypersensitivity to sensory stimuli, such as nystagmus, positive Romberg test and Babinski’s sign. QEEG, MRI and SPECT scans have all demonstrated brain damage in ME patients. This is supported by the International Consensus Criteria for ME, ‘The Clinical and Scientific Basis of Myalgic Encephalomyelitis’ edited by Dr. Byron Hyde, and any papers on ME by Dr. Melvin Ramsay and Dr. Elizabeth Dowsett.

Of course the term “ME/CFS” can mean anything or nothing. I agree with you about Dr. Jason not studying or representing true ME patients.

Excuse the spelling errors and of course I meant to write SEID, even thought SAID would be ironically more appropriate — Systemic Acquired Immune Disease.

@mary,

Your response reinforces what I said.

It is one thing to recognize and accept that ME is classified under code neurological and another to state that ME/CFS is “neurological disease most similar to multiple sclerosis”.

There is no scientific data which points to a primary neurological disease or to justify such a statement.

(Just because we have some cognitive issues that does not mean these are primarily of neurological origin. For example, a person with a hangover has the very same cognitive issues like sensitive to sound, light, overstimulation, inability to concentrate and mental exhaustion. That does not make the hangover neurological in origin. Those symptoms can be explained by metabolic changes, for example.)

Jason is a psychologist, as you so rightly pointed out, and has no other qualification. He is no background immunology, oncology or Rheumatology, which is required to understand the recent immune studies and trials. Not even a general GP’s can not interpret these immune studies/trials and would send you to an immunologist, preferable to an oncologist who works in the field of cancer immunology or Rheumatology for further consultation.

And Jason has more than just one little conflict of interest not declared. He is the one who wanted to disassemble the ME ICC already back in 2012 and Jason is a former president of the Division of Community Psychology of the American Psychological Association (APA). It is the world’s largest association of psychologists with around 137,000 members including scientists, educators, clinicians, consultants and students. The APA has an annual budget of around $115m. http://en.wikipedia.org/wiki/American_Psychological_Association

Why on earth do accept a psychologist with such a background, considering the psych lobby has done us more serious harm than any other ?

Because he had once Mono at one time in his life ?

My opinion on SAID you can read here http://www.mecfsforums.com/index.php/topic,21973.msg168056.html#new

Where SAID will be placed in the WHO code is an important question, which has to be discussed by experts in the field of immunology, infectious diseases, Rheumatology and also cancer immunology.

It is certainly NOT the job of advocates, or consultation firms, to make such an important request/decision as to where our disease is classified in the WHO guidelines.

However, it is the job of advocates to see to it that they understand the research presented to guide advocacy efforts in the right direction.

Anushka

SEID is an awkward acronym with several possible pronunciations. No one will use it and no one will use four words to refer to it. The first thing to go will be “systemic” and then, just as CFS was frequently abbreviated to Chronic Fatigue or CF, “disease” will also get dropped and it will end up as Exertion Intolerance or EI. I see what you did there, IOM.

Of course the real problem with all of this is that “SEID” is just a construct, it doesn’t actually mean anything or describe any disease. The criteria are ridiculously broad and could apply to dozens, possibly hundreds of other conditions. This helps no one but government health agencies and insurance companies and actively harms ME patients.

It would be nice if advocates actually had that much influence.

Advocates didn’t invent this – ME has been listed as a neurological disease by the WHO since 1969 – that’s 15 years before the Lake Tahoe epidemic.

My understanding is that ME is actually a neuroendocrineimmune disease. That’s neurological + endocrine system + immune system. The problem is there is no classification for multisystem diseases by the WHO. It’s been discussed, but has not happened yet and doesn’t look likely in either the ICD-10-CM or ICD-11-CM. So which category should it be put under?

The IOM folks based their decision on a literature review of all of the thousands of studies and literature on ME since 1954. In addition, about half the panel members were ME expert doctors or researchers. The three core symptoms (not just PEM) combined with a severity and frequency index actually appear to be mostly influenced by the work of Leonard Jason, a psychologist. See this presentation by Dr. Jason at the P2P workshop.

http://videocast.nih.gov/summary.asp?Live=14723&bhcp=1
Starting at 1 hour 1 minute

I am increasingly disturbed that advocates who have no scientific background, nor a thorough understanding about specific biological aspects of our disease, are making scientific statements, or decision for us, which are leading us down the wrong road.

The fact that the IOM folks have chosen a name our disease after one symptom of our disease, but fails to accurately define the underlying cause or severity of our disease, is directly the consequence of you all lobbying again and again that the PEM should be recognized as the main feature of ME; I told you all back than that your sole focus on this aspect of our disease will bite you in the butt.

Now you are making the next mistake and want the label our disease “neurological”. Not only is this statement scientifically wrong, because there is no scientific data that we do in fact suffer from a neurological disease, but it brings us again very close to the label mental or neuro-psychiatric.

I suggest STRONGLY that this time you really try to understand the scientific data, which clearly points to an acquired immunological systemic disease, before you lobby us all into the next disaster.

Anushka