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"Fatigue is not a disease" - Unger Responds, Advocates Launch Petition

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On May 12th, 9 ME patient organizations (including Phoenix Rising) and 26 advocates sent a letter to Secretary Sibelius, Dr. Howard Koh, Dr. Thomas Frieden and Dr. Francis Collins at the Department of Health and Human Services (DHHS). In that letter, we expressed our strong concerns about the department's current definition activities related to "CFS" and called on them to start using the Canadian Consensus Criteria for ME, which requires the hallmark symptom of post-exertional malaise. A summary and FAQ about the letter is here, and the Phoenix Rising article about it is here.


Tell DHHS: Fatigue is not a disease

For those of you who wish to become part of this important initiative, a petition has now been created calling on the DHHS to stop using the term "chronic fatigue syndrome" and the vague "CFS" definitions and start using the Canadian Consensus Criteria. We urge all our members and readers to please sign the petition and spread the word to everyone you know.

If we get 25,000 signatures in 30 days, we will try to take the petition to the White House. It's a huge goal, but even if we don't reach it, we will use the response as further evidence of patient interest in addressing this critical issue. The more signatures we can get, the more pressure we can apply to the DHHS to stop perpetuating the "web of confusion" that has confounded ME research, made drug development all but impossible, and led to the inappropriate and sometimes harmful guidelines currently applied to "CFS" patients. To join that effort and sign the petition, please use the following link:

http://www.thepetitionsite.com/255/349/958/fatigue-is-not-a-disease/


Elizabeth Unger's Reply

Elizabeth Unger (Chief of the Chronic Viral Diseases Branch at the CDC) has now replied to the letter as follows:

Sent: Wednesday, June 5, 2013 5:58 PM
Subject: Response to signatories of May 12 letter c/o Marry Dimmock

Dear Patient Organizations and Independent Patient Advocates:

Thank you for your letter to Dr. Thomas Frieden, Director of the Centers for Disease Control and Prevention (CDC), stating your concerns about the Department of Health and Human Services (DHHS) activities related to the definition of Chronic Fatigue Syndrome (CFS), as well as your suggested steps to improve research and treatment. Your email was forwarded to me as Chief of the Chronic Viral Diseases Branch that studies CFS at CDC.

I can assure you that CDC is aware of the issues you have described and recognizes that patient advocates are essential partners in moving forward. CDC is fully committed to working with the CFS Advisory Committee (CFSAC) and DHHS to develop consensus about the case definition and name of this devastating illness. The need is not only for a case definition but also for reproducible standardized approaches to applying it, as well as for biomarkers to refine subgroups within the overall CFS patient population.

We are encouraged by the increasing engagement of NIH, FDA, HRSA, and AHRQ through the forum provided by CFSAC. The NIH’s State of the Knowledge Workshop on Myalgic Encephalomyelitis (ME)/CFS Research and AHRQ’s Systematic Review of the Current Literature Related to Disability and CFS are essential steps towards our shared goal of improving care for CFS patients. Likewise, the FDA’s Workshop on Drug Development for CFS and ME has provided new opportunities to capitalize on the energy and collaborative spirit of federal partners and stakeholders. CDC remains dedicated to conducting public health research, developing educational initiatives, and validating CFS phenotypes by utilizing the clinical expertise of physicians experienced in the care and treatment of CFS patients. CDC will continue to engage CFSAC, public health partners, and patient advocates in the development of control and prevention strategies to reduce the morbidity associated with CFS and to improve the quality of life of persons with CFS and other similar medically unexplained chronically fatiguing illnesses such as ME, fibromyalgia syndrome, neurasthenia, multiple chemical sensitivities, and chronic mononucleosis.

Sincerely,

Beth Unger


Satisfied?

At the recent Invest in ME conference, Dr. Andreas Kogelnik began his keynote address with a cartoon highlighting what we don't want: "We're ready to begin the next phase of keeping things exactly the way they are". Workshops and systematic reviews are all very well, and perhaps the department's belated efforts will bear fruit one day, but the patient community is demanding real change now.

In October 2012, CFSAC called for an urgent stakeholders' workshop on a case definition, using the Canadian Consensus definition as a starting point. On May 12, 2013, 9 patient organizations and 26 independent advocates called for DHHS to adopt the Canadian Consensus definition for ME and dismantle "CFS". In response, we have been told that preparations for a systematic review of the current literature are under way, the agencies are demonstrating 'increasing engagement' and as advocates we are 'essential partners in moving forward'.

That isn't an answer, it is not what we called for, and it simply isn't good enough. If CDC is "aware of the issues" we described in our letter, then it is aware that its continued failure to adopt a disease appropriate case definition is unproductive and harmful to patients. It should make the appropriate changes now to mitigate that continuing damage. We can't afford to wait for the various agencies to gather evidence in a process which by their own admission has - so far at least - excluded those patients who are bed-bound.

We do not claim that the CCC is a perfect case definition, and many of us would ideally wish for the DHHS to leap ahead to the ICC, but the adoption of the CCC would be a huge step forward. As we said in the rationale for our recommendations, we believe that "it provides the best option to establish a disease appropriate baseline definition in the short term that can readily be further evolved in partnership with ME experts as additional data, knowledge and experience is gained, and as the definition is further operationalized and biomarkers are validated."

So if you're not prepared to wait - until 2014...or 2015...or 2016 - for the DHHS to eventually come up with its own consensus case definition for ME, then we urge you to join us in calling on the DHHS to enter the 21st century and adopt the 2003 Canadian Consensus definition. Please sign the petition - and don't forget to ask your friends...

http://www.thepetitionsite.com/255/349/958/fatigue-is-not-a-disease/





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Comments

That's the judgement that we're being asked to make. Will this initiative improve patients' lives? We disagree in our assessment.
I am astonished that you do not think that this initiative, if supported, and ultimately adopted, would hugely improve the science and our lives. GET, CBT as suggested by CDC, the Reeves definition, and the term CFS all ultimately severely exacerbate ME in many patients, deprive us of needed and deserved support and understanding and even kill some ME patients!

I think your comment that a statement referencing A quote from Carruthers et al. was "intellectually dishonest" is completely untrue and your making such statements is harmful to us as a patient community. Please, let's try to work together- our survival depends on it.
 
I want the equivalent of a Haynes Manual for M.E.

It would guide me through the diagnostic process in a manageable way. Country specific , including where to go for what tests .

Also included would be templates to Doctors toteach them and gain access to tests .

Plus I think getting the top M.E. specialists involved with writing a letter, even if its simply , this is the procedure fortesting for M.E.
would also help me stop being screwed over in the doctors surgery .

The Haynes Manual would also go through the finite list of other illnesses it could be and how to test and interpret results .

I would also request Pheonix Rising stop using ME/CFS on its website header as its a source of confusion when actually the situation is rather clear .

I would suggest the full names followed by brackets Myelgic Encephelitis (ME ), Chronic Fatigue Syndrome (CFS), ....(CFIDS ),.....(FM)

CFS might be ME for some people , in which case testing should confirm this Then people should get support and motivation to find out the real diagnoses and a Haynes Manual would help this , instead of being left on a pile to rot under a lazy diagnoses of CFS .

Also people in the UK are diagnosed with ME randomly and incorrectly too (as I was ).

I am never going to support an initiative that harms people with ME - and I worry that that is what is happening. For all the reasons already addressed .
 
Yes, I think that we would all like that , but I think the issue here is much more grave and dangerous. The problem as I see it with the current name of CFS is that the medical community has such a dismissive way of dealing with the patients it labels, that it borders on dangerous.

Because of my CFS diagnosis, my local GP thinks of me as a complainer and exaggerator. When I tell him that I have been bed bound for months, he gives me a smirk and thinks of what new antidepressants he can shut me up with. When 6 months ago, I came in with scary new symptoms of numbness in my lips and tongue, he laughed it off as a sign of stress. Knowing better than that, I followed up with a neurologist who took an MRI of the brain. They found I had a brain tumor for which I needed radiation therapy.

I spoke about this in my CFSAC testimony. Very few doctors will take this illness seriously with the current name of Chronic Fatigue Syndrome. This is where the viscous cycle begins. Unger says, before we can change the name or choose a set of criteria we need studies, research, biomarkers..etc. But, how can we have the proper studies and research when so few are taking this illness seriously or when there is no funding for us available. If we had a proper name and a proper set of criteria, it will naturally follow with more interest and funding......
Exactly! Thank you, Gabby.
 
Or we can just use "Akureyri disease". It will baffle almost everyone - the population of Iceland is only 300,000, and the rest of the world won't recognize the name or have any already-formed prejudice about it. It will sound quite impressive. But we'll have to learn how to pronounce it first.
I like Punta Gorda Fever, cause it sounds evocative, like Akureyri disease.

I can almost picture CDC airlifted in to some remote rainforest to ferret out Punta Gorda Fever while the clock ticks ominously down to an outbreak scenario (even though Punta Gorda Fever was actually named after a town in Florida) like they did with Rift Valley Fever or Bolivian Hemorrhagic Fever.

"CFS" is so drab! I just picture CFS as the Walmart supervisor walking over to disgustedly tell a tired middle aged cashier to get some coffee and work faster, the line is getting too long.

We need some flair, girlfriend. : )
 
Okay, maybe I'm oversimplifying the matter, but sometimes it helps to look at the forest and ignore the trees.

DHHS needs to understand that there's a lot of us (with supporters) who are seriously concerned about the problem of the name CFS and the use of ridiculously broad criteria like the CDC Empiric or Oxford. The likelihood that anything will happen exactly as requested in the petition is nil. The real benefit of this petition is most likely to be the whack upside the head that some individuals in positions of authority will get -- a realization that there are a lot of us and we mean to start knocking on their doors.

This is our own version of "I'm mad as hell and I'm not going to take it any more!" It's our line in the sand. This is about standing together and making ourselves heard. It's political, not scientific. The details are irrelevant. Does anyone really expect the DHHS to say, "Oh yes, you're exactly right, nail on the head. We'll do exactly as you say."? Of course not. The details are going to be argued and debated to death after the petition is read however we write it. What is important is that we are seen and heard as a community to contend with. For that we need to forget our differences and get ourselves heard. This petition can do that for us if all of us unite and sign this petition as a message to DHHS that we are here and we intend to be heard.
Very eloquently stated!
 
I can understand ME patients in the UK not wanting to be contaminated with the "CFS" fiasco because I am an ME patient in the US that does not want to be contaminated with the "CFS" fiasco. But thanks to our infamous CDC, I have been caught up in that web with no place to go. ME patients in the US have been obliterated and ignored since day one of the 1984 Incline Village ME outbreak, which was totally mishandled by the CDC. This outbreak eventually was given the name "Chronic Fatigue Syndrome," which in turn was subsequently expanded to include who knows what kind of "fatiguing illnesses." ME virtually does not exist in the US, even though many of us are ill with ME. Along the way, efforts were made by some our ME doctors and researchers to get that name changed. As an interim step, the term ME/CFS was proposed with the thought that as future research revealed more of the neurological, immunological, etc. nature of this disease, the CFS would be dropped and we would be back to ME. That was the plan, and US patients began using ME/CFS. Now, we could at least distinguish ourselves from "chronic fatigue," depression, etc. Just as we didn't want to be contaminated with the "CFS" fiasco, we also don't want to be contaminated with the psychiatric fiasco taking place in the UK and other European countries. There was a very unfortunate time when Dr. Reeves of the CDC shared the same views of the psychiatric proponents in the UK, and they fed off each other. We both have had these traumas and injustices to work through. We both want the same thing: ME recognized for what it truly is -- a complex, severely debilitating neurological disease with multi-system involvement as described in Ramsay or CCC or ICC. I believe that is the goal of the letter to DHHS and this petition. It is my hope that these actions will put pressure on the US DHHS to open up this dialogue so that the process of getting an accurate and appropriate case definition for ME in the US will begin, so that fruitful research and appropriate treatments can follow. This is not just a US or UK problem. ME knows no boundaries. Signatories on the petition come from many different countries: Norway, New Zealand, Netherlands, Italy, South Africa, Ireland, Spain, Germany, Korea, Japan, Greece, Croatia, to name a few. ME is a global problem and it will take international cooperation and support on all levels to tackle it.
This is key.

@RLC- this is a letter to the US DHHS and thus deals with the fact that CDC changed the name of ME in this country to CFS. In the UK Sharpe and the other frauds just then went further and repackaged idiopathic CF as their own "Oxford CFS". So I understand why UK and other non-US advocates want to "keep CFS and ME separate."

However, again, this is dealing with the US situation in a letter to the US government, so obviously, the US history of the nomenclature is what is relevant, not the UK nomenclature. Thus, in this letter, it is appropriately demanded that The Disease be called by its traditional name, ME and the CFS name be dropped and in addition that the highly accurate CCC be adopted as the official definition since it has been scientifically validated and is in use in research studies, neither of which are the case with ICC.
 
willow tree and others ,

Is it just the USA that does not use the definition ME?

For me, its not about being contaminated by CFS etc.

The only way I can get my head to understand this is by calling the 'real ' ME - contagious !

I have been reading the Nightingdale ME Criteria. These Doctors dealt with the contagious ME . (over 68 outbreaks)
The Science was in place. Though , like lupus or ovarian cancer , there was no direct ME test , there was a definite pattern of illness and biomarkers which all combined made ME simple to diagnose. This included SPECT scans . Brain damage can be seen .

That is HUGE for me - Do you know I am told there are no tests for ME !! This leaves me open for a slapstick Depression diagnoses ( for which of course - there is no blood test for either!!! - but hey not to worry about being hypocritical or scientific)

So , I think of it in terms of rabies .

Then for some peculiar reasons we have CFS made up and around 9 different criterias for each CFS diagnoses .

The CCC and ICC definitions are not of the contagious ME ....

My personal problem is that using the CCC criteria - I would never discover if I had (contagious ) ME - because the proper diagnostics will not be applied ...

If I didnt have it - I would also never discover what I did have - because it would be masked under a false diagnoses of ME ... The ME which forfils the CCC or ICC criteria . - perhaps they could be called sudden ME & gradual ME . As CFS has no place imo .

What would happen is a mixed group of patients under an umbrella term ME - and proper research can never take place .

I am just not understanding , and I Have Really been trying , but I cant see how it helps anyone to mix up these diseases ...

I have been sloppily diagnosed with ME , then some years later it appears asked CFS , then ME/CFS . I probably would personally benefit in terms of labels and connotations from it being called ME - but only if thats what it actually is .

I think there are so many other physical causes , vaccination damage , mercury poisoning , pesticide/chemical poisoning , Lyme disease , etc. etc. that I think if its not ME (COntagious) - then its highly likely another physical source - and no - CFS comes nowhere near - its not fatigue etc...

I just wanted to clarify that I am thinking of the people with ME (contagious ) - how are they ever going to get the help they need if the Original Criteria has been contaminated??? How are Scientific studies ever going to yield Truth if the patients all have different illnesses ? This is why it feels like a lose /lose ...compromise to me .


I recall some good psychiatrists in US raising the epidemic alarm ...because way too many parents of kids with ME were being diagnosed with munchaussens by proxy - this illness has a regular percentage - ...

but these psychiatrists were ignored . All that suffering . There certainly have been many twists and turns in this epic.
 
Byron Hyde, M.D. is the Founder and Director of the Nightengale Research Foundation in Ottawa, Canada. He was the featured speaker at the Massachusetts CFIDS/ME & FM (Chronic Fatigue and Immune Dysfunction Syndrome/Myalgic Encephalomyelitis and Fibromyalgia) Association's October 27, 2012, lecture. His topic was “Why Doctors Can’t Diagnose and What Tests Should be Considered.” Here is the link to videos of his lecture. They are informative, eye-opening, and well worth a look see.

http://www.masscfids.org/news-a-events/410-dr-byron-hyde-2012-fall-lecture-videos-posted

In his lecture, he does use the terms ME, ME/CFS and CFS (stressing acute onset) interchangeably. He presents good information pertinent to this discussion. The second part is titled "Fibromyalgia," but there is a lot of info there on ME and/or ME/CFS.
 
Hi Tania, RE

Hi ric. I'd like to say that one cant always rule out all the other things as many illnesses can be very hard to diagnose or a certain percent with certain illnesses are commonly missed by our normal tests the doctors do even when trying to rule out a certain illness..
Just because some diseases involve more effort to diagnose then others doesn’t mean that they can’t be diagnosed.

Some people seem to be arguing that because it takes time and money to correctly diagnose some conditions, that this shouldn’t be done, which will leave people with these illnesses to suffer, I do not believe that this is an acceptable option.

The vast percentage of people who are misdiagnosed with CFS, have easy to diagnose and treat illnesses. Which cost very little to diagnose and treat.

The argument that it will be too expensive to test people correctly to find out what is wrong with them is not valid! The amount of money that is wasted every year, in paying sickness benefits to people who could easily be cured if anyone bothered to test then correctly, and the amount of tax revenue that is lost because these people are being left to suffer when they have treatable illnesses, plus the millions of dollars wasted on researching mixed cohorts of patients and saying it is ME research. Would pay for everyone to be tested correctly. It makes no financial sense to not test people correctly.

As Dr Hyde says

"The technological component of a reasonably complete investigation and body mapping rarely should cost more than $10,000.

The majority of ME/CFS patients cost themselves, or the medical system in which they operate, far more than $10,000 over the course of their illness in a totally nonstructured series of haphazard investigations. Even compared with a year's income, $10,000 represents a fraction of the patient's or employer's loss. When compared with a lifetime loss of $1 million to $15 million, such an investigation cost is paltry."

Byron Hyde, page 8-9 The Complexities of Diagnosis http://www.nightingale.ca/documents/ComplexitiesofDiagnosis.pdf

You should have had the correct testing for what are possibly implicated as the cause of your health problems years ago; the cost of this would be minimal, in comparison to the amount of money that your illness has cost the Australian Government.

RE

I do agree thou with you that doctors do need to do more testing of ME/CFS people.. but at what point does one stop
One stops when the correct diagnosis is found! If one isn’t, the patient should be diagnosed as having a disease of unknown cause which should be a Notifiable Disease. And the medical systems around the world should be adding patients with an unknown disease to a data base of patients with an unknown disease. These patients should then be asked if they would like to be involved in properly funded scientific research to find out what is causing their illness, and asked if they would be willing to leave their body to science to research in the event of their death.

There will never be a “test for ME which proves that one has it”, while those involved continue to profit with millions of dollars of research money provided by the likes of the US government studying mixed cohorts of patients with many already known illnesses that the paltry testing done on these people before they are researched fail to diagnose.

The research of mixed cohorts has gone on for nearly 30 years and has achieved nothing, If anyone is actually serious about wanting to find the cause of ME, they need to start advocating for proper testing to be done to rule out other known diseases in the patient cohorts being studied, or else we will be in exactly the same situation in 30 years time, and the only people who will have received any benefit are the people making fortunes out of studying mixed cohorts.

The CCC says that ME and CFS are the same disease which helps no one. It requires a waiting list of six months before a patient can be diagnosed which is madness, it is just a collection of very common symptoms found in hundreds of diseases, with a list of tests that is so minimal that that it won’t even come close to being able to diagnose all the illnesses that cause these symptoms. It doesn’t even say that Vitamin D deficiency should be tested for, which is the most common cause on the planet of these kinds of symptoms. The CCC is just another deficient CFS definition, it is not a ME definition and bares no resemblance to the disease ME which is described in the medical literature from the ME epidemics from 1934 onwards.

This is why I urge people not to sign this petition! And instead start demanding that Phoenix Rising, and the other US CFS advocacy groups, start warning people that they maybe misdiagnosed, and start providing information to patients so that they can ask their doctors to test for diseases that are commonly misdiagnosed as CFS, and start advocating for the US government to provide better information to doctors and patients as to what should be tested for, because the current recommendations in the CDC toolkit are pathetic!!!!!!!

All the best Tania, I hope you can get your doctor to do the correct tests soon!
 
Hi JustinReilly, RE

this is a letter to the US DHHS and thus deals with the fact that CDC changed the name of ME in this country to CFS. In the UK Sharpe and the other frauds just then went further and repackaged idiopathic CF as their own "Oxford CFS". So I understand why UK and other non-US advocates want to "keep CFS and ME separate."

However, again, this is dealing with the US situation in a letter to the US government, so obviously, the US history of the nomenclature is what is relevant, not the UK nomenclature. Thus, in this letter, it is appropriately demanded that The Disease be called by its traditional name, ME and the CFS name be dropped and in addition that the highly accurate CCC be adopted as the official definition since it has been scientifically validated and is in use in research studies, neither of which are the case with ICC.
The CDC did not!!! “change the name of ME in this country to CFS.”

The CDC has in fact made it very clear That ME is not CFS, for years it had this statement on its website.

“The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS.”

If anybody bothered to read the original 1988 Holmes CFS definition http://www.cfids-me.org/holmes1988.html

They will find that the CDC did not renamed ME, CFS, or invented a new illness. What they actually did was rename Chronic Epstein Barr Virus Syndrome, Chronic Fatigue Syndrome.

Which they show very clearly in this publication when they say

“We propose a new name for the chronic Epstein-Barr virus syndrome - the chronic fatigue syndrome”

They proposed changing the name from Chronic Epstein Barr Syndrome to Chronic fatigue Syndrome because in their own words.

“serologic associations between the syndrome and cytomegalovirus, herpes simplex virus types 1 and 2, and measles virus were as strong as or stronger than the association with Epstein- Barr virus.”

Therefore calling it Chronic Epstein Barr Syndrome was probably not an accurate description of the illness. Hence the proposed change to Chronic Fatigue Syndrome.

ME has always been in the US ICD codes under the names Iceland Disease- Epidemic Neuromyasthenia (the US name for ME) see http://www.eicd9.com/index.php?action=alphaletter&start=40692&mv=p were it is described under code 049.8 as Other specified non-arthropod-borne viral diseases of central nervous system http://www.eicd9.com/index.php?action=search&srchtext=049.8

It is not the CDC who has for decades been saying that CFS is the same as ME, it is US patient advocacy groups such as the CFIDS Association and PANDORA, and the group of self proclaimed CFS expert doctors (who have received vast amounts of money from the patients), that have been saying it, and have misinformed the US public as to what the real facts are. It is they who have created this situation not the CDC!

However is it just a strange coincidence that this gets the CDC of the Hook for not investigating ME?

The result of all of this is that your statement

However, again, this is dealing with the US situation in a letter to the US government, so obviously, the US history of the nomenclature is what is relevant, not the UK nomenclature.
Is not true, ME has always been a recognized disease in the US, it has always had its own ICD code under the US term for ME Epidemic Neuromyasthenia (which incidentally this name was co created by Dr D.E Henderson when he worked at the CDC in the 1950s) And it has publically been stated on the CDC website for years that ME is not CFS!

Yes the situation in the UK is very different! The UK government has been saying for years that ME and CFS are the same disease.

Whereas in the US, the US government has always recognized that ME and CFS are different diseases, and it is the US CFS advocacy groups and some self proclaimed CFS expert doctors who have been convincing the US public that CFS and ME are the same disease, and have failed to inform the US public that ME is recognized by the CDC as a separate condition to CFS, and that there has always been a ICD code for ME in the US under the US name for ME Epidemic Neuromyasthenia!

To make matter even worse the new US ICD-10-CM under code G93.3 recognizes ME and states quite clearly that Chronic fatigue Syndrome is excluded from this category. http://www.icd10data.com/ICD10CM/Codes/G00-G99/G89-G99/G93-/G93.3

So there we have it ME recognized in the US ICD codes as not being CFS, what everyone claims they want.

But the reaction of the US CFS advocacy groups including Phoenix Rising was to try and get CFS recoded so that it has the same ICD code as ME, and therefore continue the confusion.

It is strangely coincidental that the same US CFS advocacy groups that were behind the Coalition 4 ME/CFS proposal to change the US ICD codes, so that ME and CFS have the same ICD code. Are now saying that they want the CCC, a definition that very clearly says that CFS and ME are the same disease, and then just pretend that it doesn’t, and say it is for ME. Thereby keeping the confusion going that ME and CFS are the same disease when they are not.

The US Government has now started using the term ME/CFS which keeps the confusion going that ME and CFS are the same disease, the NIH know use this term as synonymous with CFS for its CFS funding.

This however is not the US Governments Fault!

This came about because the CFSAC recommended this

3.Adopt the term "ME/CFS" across HHS programs. http://www.hhs.gov/advcomcfs/recommendations/1012-142010.html

This move was backed by US CFS advocacy groups including the CFIDS association!

RE

in addition that the highly accurate CCC be adopted as the official definition since it has been scientifically validated and is in use in research studies, neither of which are the case with ICC.
The CCC has not been scientifically validated!! There have been no peer reviewed replicated research that say that the CCC is correct. So therefore what you are saying is not true.

It is not highly accurate, its own authors have had to write another definition the ICC, because the CCC is so flawed. So what you said about it being highly accurate is also not true.

Yes it is in use in research, which begs the question as to why those involved in this research would use the CCC, which has a testing list to rule out other diseases that is so bad that it does not even include the most common cause of these kinds of symptoms Vitamin D deficiency. Could the reason why these people are using it be, that most of them were either involved in writing it, or closely connected to the people who did? Answer, yes!

The reality is that the scientific community who are not part of this small group of self proclaimed CFS experts, has rejected the CCC and hardly anyone has used it.

I take it that those responsible for this letter to the DHHS are happy that if their proposal is accepted, patients will continue to not be tested correctly to rule out other diseases that cause the same symptoms as those found in the CCC? Because, the CCC testing recommendations don’t even rule out all the diseases, that can cause the symptoms in the CCC.

I also find it very interesting that the CFIDS association also want the CCC used.

You imply in your post to Ember that this move will get rid of GET and CBT, yet this letter to the DHHS, states that the transition will be managed by using the CFS/ME primer.

But the CFS/ME primer states that

Exercise Recommendations. An individualized activity plan should be developed in collaboration with the patient. 72,73 Consultation with rehabilitation professionals knowledgeable about ME/CFS may also be desirable. Any exercise or activity program should seek to minimize the negative effects of exertion on impaired aerobic function.



Exercise should also not take priority over activities of daily living.



Initially, the patient’s degree of activity limitation can be estimated using a functional status rating such as the Functional Capacity Scale (Appendix C). This 10 point scale ranges from 10, for symptom-ree individuals scale ranges from 10, for symptom-ree individuals scale ranges from 10, for symptom free individuals, to 1, for patients who are bedridden and unable to perform activities of daily living.



Severely ill patients (functional capacity rating 1-3; Appendix C). Homebound and bedbound patients may benefit from in-home services that provide assisted range-of-motion and strengthening exercises. Exercise lying down should be avised when exercise standing or sitting is poorly tolerated. Initially, interval training exercise should begin with gentle stretching to improve mobility utilizing intervals of 90 seconds or less. The patient should rest between intervals until complete recovery has occurred. Additional intervals can be added when the stretching exercises do not trigger post-exertional symptoms. Then, resistance training can begin (functional capacity rating 4-5) with elastic bands or light weights. As endurance improves, short-duration interval training such as leisurely–paced walking, swimming, or peddling on an exercise cycle. 74 The initial duration may vary from 5-15 minutes a day depending on how much the patient can do without provoking symptom flares. These higher functioning patients may also benefit from adaptive yoga and Tai Chi.

5:7 Cognitive Behavioral Therapy (CBT)



CBT is a much publicized and debated psychotherapeutic intervention for ME/CFS that addresses the interactions between thinking, feeling and behavior. It focuses on current problems and follows a structured style of intervention that usually includes a graded activity program. CBT may improve coping strategies and/or assist in rehabilitation, but the premise that cognitive therapy (e.g., changing “illness beliefs”) and graded activity can “reverse,” or cure the illness is not supported by post-intervention outcome data. 78, 79



Seems to me that this letter to the DHHS is very likely to result in every one being prescribed GET and CBT!

So in short this letter to the DHHS does nothing to help end the false beliefs propagated by the US CFS advocacy groups that CFS and ME are the same disease. In fact what it is asking for is that CFS should not be used and everyone is to be called ME, even though the CCC which the patients are supposed to be diagnosed with is not an ME definition! It does not raise the important issue that many people diagnosed with CFS are misdiagnosed due to the CDC toolkit and definitions, very flawed recommendations on how to tests people to rule out other known diseases that cause the symptoms given to CFS. It is full of factual errors, as is the information being put on this website by those trying to get people to supports this petition. And this proposal is very likely to get all US patients prescribed GET and CBT.

As the people who benefit from the continual promotion that CFS and ME are the same disease, are the CDC and NIH, because it gets them off the hook for not spending a cent on ME research since the mid 1980s, And all the other vested interests that are making fortunes out of this mess.

I don’t think that anyone should sign this petition which asks for the CCC to be used, as the CCC says that ME and CFS are the same disease, which only benefits those who have been profiting from saying that CFS and ME are the same disease. No amount of pretending that the CCC is an ME definition is going to help, in fact it is completely absurd and farcical!

I am surprised, Justin that you have decided to associate yourself with the groups responsible for this letter to the DHHS.

All the best
 
Yes, I think that we would all like that , but I think the issue here is much more grave and dangerous. The problem as I see it with the current name of CFS is that the medical community has such a dismissive way of dealing with the patients it labels, that it borders on dangerous.

Because of my CFS diagnosis, my local GP thinks of me as a complainer and exaggerator. When I tell him that I have been bed bound for months, he gives me a smirk and thinks of what new antidepressants he can shut me up with. When 6 months ago, I came in with scary new symptoms of numbness in my lips and tongue, he laughed it off as a sign of stress. Knowing better than that, I followed up with a neurologist who took an MRI of the brain. They found I had a brain tumor for which I needed radiation therapy.

I spoke about this in my CFSAC testimony. Very few doctors will take this illness seriously with the current name of Chronic Fatigue Syndrome. This is where the viscous cycle begins. Unger says, before we can change the name or choose a set of criteria we need studies, research, biomarkers..etc. But, how can we have the proper studies and research when so few are taking this illness seriously or when there is no funding for us available. If we had a proper name and a proper set of criteria, it will naturally follow with more interest and funding......
Sorry I'm late replying. Trying to catch up a little this morning.

Is it the name or is it that our condition is regarded as 'medically unexplained'? Would a distinct label alter perception of the MUS? Would a new criteria? Or would this be a stepping-stone towards something more substantive?

I think it would be the latter but unfortunately not for everyone, as not every doctor would regard the 'new' name and criteria as anything substantially different to the old. Indeed I doubt very much if this would result in any new categorisation for reasons we have been discussing above (and on the earlier thread).

We won't get what many want until - to take MS as a commonly used example - damage to the myelin sheath is discovered and linked to the symptomology. Until a test is designed and we are all re-confirmed as having X - and whatever the resulting diagnosis is named.

As a stepping-stone then yes I can see it having a positive impact in the patient community - but it won't change treatment options unfortunately as many perhaps expect it to.
 
Byron Hyde, M.D. is the Founder and Director of the Nightengale Research Foundation in Ottawa, Canada. He was the featured speaker at the Massachusetts CFIDS/ME & FM (Chronic Fatigue and Immune Dysfunction Syndrome/Myalgic Encephalomyelitis and Fibromyalgia) Association's October 27, 2012, lecture. His topic was “Why Doctors Can’t Diagnose and What Tests Should be Considered.” Here is the link to videos of his lecture. They are informative, eye-opening, and well worth a look see.

http://www.masscfids.org/news-a-events/410-dr-byron-hyde-2012-fall-lecture-videos-posted

In his lecture, he does use the terms ME, ME/CFS and CFS (stressing acute onset) interchangeably. He presents good information pertinent to this discussion. The second part is titled "Fibromyalgia," but there is a lot of info there on ME and/or ME/CFS.
Thanks Willowj :)

I will look at that now , thats great ...

I see , he distinguishes CFS to sudden onset CFS , presumably as there is more chance of it actually being (contagious ) ME . ?
and because ME is not diagnosed in America . edit : Surely the fundamental issue , if there is an ME code in America - is correct diagnoses and to start applying it ? (just read rics post)

Mine was sudden onset but I have a number of factors to confuse things further .
 
That was really helpful Hydes 2012 lecture .... The Questions and Answers section was good too....

Questions & Answers
Q:1) Is an annual flu shot a good idea or a bad idea for an adolescent with ME/CFS?
A: For an adolescent, the dosage of mercury alone every year is really, really additive and can cause brain injury in some people. Folks over 65 years old don’t usually seroconvert to flu. It is given to everyone, especially in nursing homes, to prevent the spread of flu but it doesn’t help the patient. Almost any immunization given to a person over the age of 65 won’t seroconvert, meaning they won’t build up antibodies adequately. A few people might, but not sufficiently. I’m not one for flu immunization. I’ve seen too many bad things.
Q: 2) US groups are trying to combine ME & CFS and code them the same―what do you think?
A: They are not the same. Chronic Fatigue Syndrome was invented by Stephen Straus who thought he had Chronic Fatigue Syndrome when he had a brain tumor. You have to examine these people. I think the only way you can diagnose ME is you do a brain SPECT when the patient is tired. It is as simple as that. If their brain looks perfect, something else is causing their fatigue. It’s not a brain injury. ME is only diffuse brain injury. Chronic Fatigue Syndrome can be anything from that list of things on the slide I showed you before. Anything, plus another 100 things that are not on those lists. When I am doing a report for disability insurance, even though everyone has free medical in Canada, I never mention the word ME. I never mention the word Chronic Fatigue Syndrome. I never mention the word Fibromyalgia because the lawyers who are working for the insurance companies have all these experts who come and say, “Oh, everyone knows that Chronic Fatigue Syndrome is a minor psychiatric disease and the people can really work.” So, you never mention that and you go to the heart of the matter and you go and say what is really wrong with these people.
Q:3) If acute onset of CFS and ME causes brain damage, what type of treatments might help?
A: Well, I’ve mentioned that Dr. Chia, has had good success in finding the enterovirus in the stomach mucosa of CFIDS/ME patients. We’re just starting to use treatments that Dr. Chia has been using. That’s skeptical at the moment. I just don’t know. All I know is there is no good anti-enteroviral medication in existence at the moment. There are a lot of things I don’t know how to treat. One thing I have noticed in ME is people with money get better faster. And it is not because they have access to physicians. What it is― they have a cushion. I’ve had a lot of doctors come down with severe ME and diffuse brain injury after that epidemic period, and those with insurance stopped working, were able to relax, had money coming in, were able to live a healthy life, weren’t under any stress, their mortgages weren’t being taken out from underneath them, their spouses didn’t run away, everybody was happy, the kids were happy, and they got better. Not everyone, but most of them to some degree. None of them became 100% better. The doctors who were saying “Oh, God, I’m only 35. What do I need health insurance for, disability insurance” and didn’t get insurance, and they’d just graduated [from medical school] and they came down with that epidemic, not one of them, not one of those doctors is working today. Several of them committed suicide—they didn’t get better. After you fall ill, the ability to do nothing except relax and live a healthy life, gives the body a chance to fix itself. There is no better physician than the body.
Q: 4) Thoughts on any of the following treatments that I read about that some people are trying: Imunovir, low dose naltrexone, antivirals?
A: You have to investigate the patient thoroughly to find out why they are ill and know what you are treating.
Q: 5) What is POTS?
A) Postural Orthostatic Tachycardia Syndrome is one of the classic dysautonomias. We see it most commonly after the recombinant hepatitis B immunization. We have 200 patients I mentioned earlier with POTS. What is POTS—your heart rate, which should be running around 60-80 beats per minute, should drop to 45 beats per minute when sleeping. What happens with POTS people when they’re sleeping, is that their heart rate may drop down to 55-60 beats per minute and then when they awake, and try to move or do anything, their heart rate rises to over 100 beats per minute, which is tachycardia, or close to it in the 90’s. If they get excited or if they try to do anything their heart rate may instantly go up to 150 to 200 beats per minute. If you put them on a treadmill, their heart rate can go up to 300 and you have to stop them. POTS is a major consequence to several other conditions. One is a brain injury, and injury to the system regulating the pressure in the blood vessel. I spoke about it earlier, I just didn’t use the word POTS.
Q: 6) I had acute onset of ME 1990 after a bout of pneumonia – had years of recurring infections. Now, in 2012, diagnosed with Sjőgren’s (via positive salivary gland biopsy), joint enlargement deformity/pain – worsening of dental issues with tooth loss. Do I have autoimmune disease replacing ME? Both?
A: Of course you do. Forget about the names ME, CFIDS & FM. Ask what is causing this real symptom. You can’t run off and have a test. You have to have a total body examination.
Q: 7) How do you do a workup?
A: I’ll try to send to your group my working profile and you may even want to publish it. It will give you an idea of how extensive my exam is. We do Skype interviews with patients for 2 hours and sometimes we can help them.
Q: 8) Is a TB test a good idea?
A: We do a tuberculin skin test on every patient. We have picked up 5 cases of TB among people who think they have CFS. And it is so simple to do. It is a little skin test, costs nothing, put a little bleb underneath the skin. If the next day you have a big red reaction, you may have TB. You could have other diseases which could blow up.
Q: 9 ) I have very high heavy metal toxicity after EDTA & DMPS chelation. I have become much worse with my ME & FM. Your thoughts on this?
A: This treatment really doesn’t work. I don’t know a treatment that works. The idea of chelation has made a lot of people rich in Canada and the United States. What happens with heavy metals toxins is it goes in the brain. We had some serious injury to farmers when I was working in Glasgow for a short period of time. The doctor was doing every test he could on these farmers. We found exposure to different kinds of pesticides, herbicides and metals, but nothing special. They put them through chelation and all sorts of things. There was nothing we could really prove until they died. When they died, we got their brains and the brains were so solid with mercury, pesticides and herbicides that I phoned the Mounties, our national police force, like your FBI and CIA combined, and asked, “If you wanted to murder your husband with a nice milkshake of herbicides and pesticides could you tell?” They said, “We can’t.”
Q: 10) How does POTS contribute to CFS?
A: It doesn’t contribute. POTS patients have it the worst. The POTS and autonomic nervous dysfunction people are so terribly ill—those are the ones that are not usually here. The better POTS patients might be here, but the serious ones are home in bed right now. They don’t even know there is a Massachusetts organization to help them.
Q: 11) What can you tell us about the relationship to gender and CFS/ME?
A: I mentioned earlier about the difference between RA and girls and boys. Boys don’t get it and the girls do. What you are looking at with women is that they have a very different immune system. 80% of the all of the ME/CFS type patients are women. 80% of all of the MS patients are women. 80% of the RA patients are women. They have an immune system that is organized so that when they get pregnant they don’t reject the baby as an autoimmune reaction. Their immune system shuts off as part of their natural reproductive ability to develop and build a healthy child. They already have an immune system which shuts off and starts on its own, so they are more vulnerable to any autoimmune disease and most of the CFS diseases that we have talked about are highly related to the autoimmune system.
Q: 12) Are women who had children more likely to get ill?
A: I don’t know. I’ve never done the statistics on that. The last time we did statistics was around 15 years ago when we were looking at patients after the epidemic period of 1984 and that is one question we didn’t ask, and that would have been a really useful question.
Q: 13) What’s the difference between acute ME & CFS and gradual onset?
A: ME is a diffuse brain injury that is measurable. If you can’t measure it you don’t have ME. CFS depends on whether the onset is acute or gradual—if acute, it can be a combination of genetics, immunizations, medication, viral infections, things you can’t always prove, trauma, brain injury. It can be a combination of things.
Q: 14) Can you explain more about gradual onset?
A: Gradual onset patients are one of the most interesting sub-types of CFS because it almost always is something which is building in the patient. Those patients are the ones we find cancers in, those are the ones we find organ injury in, but those are the ones that are often best treatable. But you have to find out why.
Q: 15) What’s the difference between acute and chronic?
A: Most people who have acute onset ME get better. If they are not better within a year, they lapse into what we would call chronic. And very few of those people get better. On their own, probably 25 % of that group does get better. But that still leaves a large percentage of patients that don’t get better. You have to stop thinking in terms of ME, CFS and FM. You have to ask what is causing my Chronic Fatigue Syndrome. That is absolutely essential. If you can answer that question you have a chance of curing the patient.
Q: 16) Did you have the polio vaccine before getting polio?
A: I fell ill in grade 8 so I must have been around 11-12 years old and that was 1948. The vaccine came out in 1954-55. But even before the vaccine was introduced in 1954, it had been tested on people in the island of Newfoundland and in the island of Granada, and it killed pretty well everyone they gave the immunization to. So the vaccine was withdrawn and retooled. It was reintroduced somewhere else and it didn’t kill the people and ever since it has been the safest immunization known to God and man. It was a wonderful invention.
There had been a high risk of having your child die from polio. You hear about all the paralysis, but not about the deaths. Most of these kids died. It was also mainly women who died, not kids, but you didn’t hear about those statistics because there was no research money for women in those days. Money was easier to get if children were being studied. I don’t know if any of you remember Little Jimmie, the March of Dimes advertisement. Even then, women would give money for the study of children. Only later did the advertisers bring in a girl.
Q: 17) Is medical cannabis an option for replacing other meds?
A: I was on the medical committee in Canada, the LeDain commission, which looked at the safety of drugs. The LeDain commission came out showing that marijuana was not dangerous at all. Medical cannabis depends if you are taking it by a pill form, inhaling it from a cigarette or taking it internally as in the wild stuff. All my friends who grow cannabis are as ill as can be physically. And they smoke it all the time. Does it help you sleep, yes, it does, so does cocaine, so does morphine. Do you get good sleep? Anything you inhale into your lungs is causing you major, major damage. I’m not one for cannabis.
Q: 18) Do you win when you go up against American insurance companies?
A: We almost always win. It is not because we’re good; it is because of what we do.
Q: 19) How do you afford to practice medicine?
A: I make an average of $40,000 a year in medicine. Every now and then I buy a property and sell it at a ridiculous price 5-10 years later and make a couple of million dollars. It is easy to make money but it is boring. But in medicine I just like to try to figure out what is wrong with people and that is a lot of fun. We charge a lot of money to see American patients, about $10,000. But then we do all the testing in Canada which costs about $6-7,000. The Canadian patients are only charged about $3-4,000. However, it still takes us 18 months to investigate them and we do a better job than any of the big American clinics.
Q: 20) How do you win against insurance companies?
A: Insurance companies are really easy to beat if you know what is wrong with the patient, and these patients are seriously ill. We have done about 2000 patients since 1984 and most of them were in the early years. Now we take much longer per patient and only take about 20 new patients a year. They are easy to win because the patients are so ill. The cases never go to court because the insurance companies settle.
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You can learn more about Dr. Hyde at www.nightingale.ca

You can learn more about Dr. Chia at http://www.enterovirusfoundation.org/index.shtml

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Several years ago my breathing and lungs became severely worse .

It was a bit later that I got a call from my Mother . She told me my Father had been diagnosed with TB and he only showed symptoms of extreme fatigue and breathlessness . The Doctor told everyone who lived with him to get tested an x-ray .

I had been been been living with him which is why my mother told me - she had the test and was all clear .

It was unusual of me really , but I did actually go to my Doctors to arrange this test .

Of course I had the diagnoses ME , CFS and ME/CFS written on my records and so was DENIED this test .

Whilst I know for me it wasnt the cause - it just shows you what thorough Doctoring should look like when reading Hyde .
 
Morning Firestorm, RE



Actually we can!

The reality is that the number of diseases that cause CFS like symptoms is limited, yes it is a large number over a hundred. But all of these diseases could be diagnosed by around 40 blood tests and a few imaging tests such as MRI or ultra sound.

The majority of people that are misdiagnosed with CFS have very common illnesses that could be diagnosed by just adding ten blood tests to the NICE guidelines. So there would be no need to do extensive testing on the majority of patents as the true cause of their suffering would be picked up just by doing a few basic blood tests.

There are in fact only a very few diseases, that can be diagnosed with one test, the medical reality is that many people who are diagnosed with a serious disease will have often received 20-30 blood tests plus imaging scans etc before their correct diagnosis is found. The only reason why this doesn’t happen for people who get diagnosed with CFS, is that doctors are instructed by the likes of the NICE and CDC guidelines not to do sufficient testing on these patients and instead to hand out this idiotic CFS diagnosis which has no scientific evidence behind it, to anyone who has a set of symptoms that are found in over a hundred other diseases.

RE



Yes you are 100% correct on this, However this is why guide lines are written that doctors are told that they must follow! The problem is that the guidelines that doctors are told to follow are wrong and do not require the doctors to test for common diseases that cause the symptoms being attributed to CFS.

The NICE guide lines state that this testing should be done

urinalysis for protein, blood and glucose
full blood count
urea and electrolytes
liver function
thyroid function
erythrocyte sedimentation rate or plasma viscosity
C-reactive protein
random blood glucose
serum creatinine
screening blood tests for gluten sensitivity
serum calcium
creatine kinase
assessment of serum ferritin levels (children and young peopleonly).
Clinical judgement should be used when deciding on additionalinvestigations to exclude other diagnoses.
1.2.2.4 Tests for serum ferritin in adults should not be carried out unless afull blood count and other haematological indices suggest irondeficiency.
1.2.2.5 Tests for vitamin B12 deficiency and folate levels should not becarried out unless a full blood count and mean cell volume show amacrocytosis.
1.2.2.6 The following tests should not be done routinely to aid diagnosis:
the head-up tilt test
auditory brainstem responses
electrodermal conductivity.
1.2.2.7 Serological testing should not be carried out unless the history isindicative of an infection. Depending on the history, tests for thefollowing infections may be appropriate:
chronic bacterial infections, such as borreliosis
chronic viral infections, such as HIV or hepatitis B or C
acute viral infections, such as infectious mononucleosis (useheterophile antibody tests)
latent infections, such as toxoplasmosis, Epstein–Barr virus orcytomegalovirus.

The faults in the NICE guidelines are very well explained in this article by Dr Mirza

He states

“The recent "NICE" guidelines in the UK like their sister guidelines from the U.S. Center of Disease Control (CDC) on this side of the Atlantic both miss the boat.

I have seen and analysed hundreds of cases of chronic fatigue over the past decade without ever having to use the term Chronic Fatigue Syndrome (CFS). The problem with these guidelines is that they either omit major causes of fatigue or make flagrant misguided mistakes such as the following “NICE” statement:

“Vitamin B12 deficiency and folate levels should not be carried out unless a full blood count and mean cell volume show a macrocytosis”. Vitamin B12 deficiency (or insufficiency) is extremely common even without macrocytosis. Macrocytosis is a very late sign of this vitamin deficiency. Furthermore, a concomitant iron deficiency, such as in celiac disease, would cancel out macrocytosis and the resultant mean corpuscular volume of the RBC would be normal.

The reference range of vitamin B12, at least in the USA is outdated and new reference ranges should be implemented (300-1000 pg/ml). It is very common to miss mild vitamin B12 deficiency without checking either homocysteine or methylmalonic acid or both. The latter 2 metabolites would be both elevated when serum B12 is insufficient. Even if B12 level is 300 pg/ml but homocysteine or methylmalonic acid are elevate, a diagnosis of B12 insufficiency should be made and the fatigued patient must be treated. Vitamin B12 is a very common cause of fatigue, malaise, dizziness and vertigo in people labeled with the diagnosis of CFS.

Vitamin D deficiency is extremely common above the latitude 0f 36 in the USA. It is even more common in Europe where milk is not widely fortified with vitamin D. The daily requirement of vitamin D of 400 IU a day is a thing of the past but still promoted as if written in stone. The recent research-supported daily requirement of vitamin D is at least 1000-4000 IU a day. 25 Hydroxy vitamin D should be between 32-100 ng/ml (see a recent NEJM review on vitamin D by Michael Holick).

25% of the US population have metabolic syndrome. Many of these have impaired fasting glucose or impaired glucose tolerance (IGT). These pre-diabetic conditions cause fatigue via glycosuria. Fasting glucose measurement is not nearly sufficient to detect early glucose intolerance. A 2-hr glucose tolerance test (OGTT) is abosoluitely necessary to detect IGT defined as plasma glucose of > 130 from 30 minute- 120 minute during OGTT.

Many patients with CFS have benign positional vertigo and they don’t know it. They are basically unable to describe their symptoms and for lack of expression they say they are fatigued. In one such case the Romberg test was abnormal and symptoms resolved within 7 minutes of application of the Epley maneuver.

I have yet to see a guideline on CFS that is complete. It is a good point that NICE mentions ferritin level, although I prefer iron saturation since ferritin is an acute phase reactant and could be falsely elevated during periods of acute illnesses due to any cause such as infection. Screening for celiac disease was also a good addition since this disease is relatively common in Caucasians (1% of populations with an average of a decade of late diagnosis due to lack of awareness). Addition of sleep apnea is also a step in the right direction. I also recommend addition of free T4 to TSH (at least once) so you don’t miss central hypothyroidism. Serum early morning cortisol should be measured in every patient with CFS. If a male person has sexual dysfunction such as poor libido and erectile dysfunction, muscle weakness and infrequent shaving of beard, a free testosterone by dialysis method plus LH measurement are necessary

In summary, for me a patient with CFS is a patient who has not been adequately investigated despite adherence to big- name guidelines of NICE and CDC. A thorough and guided investigation would yield the diagnosis in almost > 90% of patients.

By adherence to my own time-honoured investigation, I have succeeded in abolishing chronic fatigue syndrome from my medical vocabulary.”

References: Holick MF. Vitamin D deficiency. N Engl J Med. 2007 Jul 19;357(3):266-81

http://www.bmj.com/rapid-response/2011/11/01/chronic-fatigue-syndrome-nice-and-cdc-miss-boat

Personally as well as being in agreement with the views expressed in the above article by Dr Mirza, I also find this statement from the NICE CFS/ME testing guidelines particularly disturbing.

“1.2.2.4 Tests for serum ferritin in adults should not be carried out unless afull blood count and other haematological indices suggest irondeficiency.”

Hemochromatosis (Genetic Iron overload) effects 1 in every 250 Caucasians, the incidence of it is even higher amongst those of Scottish and Irish decent, affecting as many as 1 in every 100 amongst those of Irish decent.

This disease is a slow progressing illness that will present with symptoms that are often the same as those that the NICE guidelines states are the symptoms of CFS/ME. If not diagnosed early enough, it will lead to permanent organ damage and eventually death. It does not affect heamatological indices.

The above pronouncement from the NICE CFS/ME guidelines stating that ferritin should not be tested in adults effectively bans doctors from testing all adult patients for Hemochromatosis. All patients with the symptoms of CFS/ME should have full iron studies done, one to diagnose Hemochromatosis and also to diagnose subtle iron deficiencies, which do not affect haematological indices, this can then lead to finding the cause of the iron deficiencies e.g. mal-absorption syndromes, internal bleeding, parasites etc.

These are only very common causes of CFS like symptoms rarer disease such as MS, Wilson’s disease and Porphyria are not even mentioned in.

So the NICE recommendations are basically instructing doctors on how to misdiagnose patients with CFS, the CDC instructs on how to rule out other diseases are although you wouldn’t think it possible even worse than the NICE ones are!

Dr Mirza’s view on the CDC guidelines can be found here http://www.bmj.com/rapid-response/2011/11/01/myth-chronic-fatgue-syndrome

The reality is that many of the diseases that are not included on the NICE and CDC lists to be ruled out are so common, that a doctor wouldn’t pass their medical degree if they didn’t know that these diseases cause fatigue.

Personally I have great respect for Professor Julia Newton, anyone who has the good sense to check if the patients diagnosis is actually right deserves respect, as to the best of my knowledge she is the first person to do this kind of study, then I will leave it to your imagination as to how much respect I have for other people in this field.

However medicine has a major problem because it is divided into specialties, and a specialist in one subject, can have virtually no knowledge of other specialties. There are specialists in Diagnostics who train in be able to diagnose all diseases, they then hand the patients over to the right specialists for treatment. Unfortunately specialists in diagnostics are quite rare, and none of them have ever been asked for help in writing the differential diagnosis lists to rule out diseases that cause the symptoms attributed to CFS.

Professor Julia Newton specials interest is mainly in Gastroenterology see http://en.wikipedia.org/wiki/Julia_Newton If you take a look at the detailed accounts of what they found were the alternate diagnosis’s in the Newcastle study http://www.rcpe.ac.uk/journal/issue/journal_40_4/newton.pdfyou will notice things like they found no cases of Vitamin D deficiency. For those that don’t know the weather in Newcastle, it can only be described as appalling; it basically has two seasons, one month of summer and 11 months of winter. It is statistically impossible that out of 375 people who had CFS symptoms which are those of Vitamin D deficiency (which is caused by a lack of sunlight) who lived in Newcastle, that not a single one had Vitamin D deficiency. So I would say that the only possibility is that they didn’t test the patients for it.

One of the main points that Dr Mirza keeps emphasizing is the many of the reference ranges for test that laboratories use are out of date, scientific research has proved that they are wrong and yet the labs keep using them. Which means that the patients true diagnosis gets missed, and they then get diagnosed with CFS. I’m not sure that Professor Julia Newton is aware of this, 99% of doctors aren’t. I would have thought if she was she would have mentioned it as it is a very important issue.

In this book review by Dr MIrza, he explains it in more detail.

“I have rigorously criticized the concept of chronic fatigue syndrome and the government guidelines (CDC in the USA and NICE guidelines in the UK). I have published comments on these deficient guidelines in the British Medical journal.


In this book, there is not even 1 word mentioned about Celiac disease or vitamin D deficiency.


Chronic fatigue syndrome is just a fancy long term for what the patient already tells us: being fatigue for a long time. How can that be a diagnosis? A systematic approach to evaluation of fatigue is necessary. Most patients with chronic fatigue are not being evaluated thoroughly. Nutritional deficiencies, vitamin and mineral deficiencies, pre-diabetes, subtle thyroid diseases, subtle pituitary dysfunction, subtle changes in male and female hormones, are among some causes. Iron deficiency, or iron overload could be a cause. Positional vertigo, peripheral neuropathy.. etc.


The key is not to fall a victim to outdated laboratory reference ranges. On average, the key lab values in the USA are outdated behind new research by 17 years. Some values are outdated by a half a century.


I have evaluated over 5000 patients with chronic fatigue over the past 20 years, not even one has received the diagnosis of CFS. Chronic fatigue syndrome is a syndrome that has not been thoroughly evaluated.


A systematic approach to human body, with a full knowledge of physiology, metabolism, biological clock, sleep, and nutrition and evaluation of every organ system is the key to diagnosis.


My initial evaluation takes over 75 minutes, initial blood tests include more than 20 tests with more to follow based on initial screening. I challenge all the outdated reference ranges based on new research articles.


This book, despite a good attempt by the author, is just another deficient tool and again, is falling a victim to the dogma of CFS.”

http://www.amazon.com/review/R28ZY8OYSWP0R

I would like to see, Dr Mirza’s methods used on the Newcastle patient study group, I imagine the number of misdiagnosed would at least double.

Previously when I have posted these articles by Dr Mirza some people have come to the conclusion that he is saying that ME doesn’t exist. He isn’t, he is saying that CFS doesn’t exist. Because ME is and always has been a very rare disease it is possible that he has never seen a case of it. Because ME is not a recognized disease in the USA the only possible diagnosis he could give a patient is brain injury of unknown cause, which is what ME is.

So yes we should be campaigning for the likes of NICE and the CDC to be providing complete differential diagnosis lists for ruling out all the diseases that cause CFS like symptoms with up to date reference ranges, and that it is compulsory that all doctors follow these recommendations, if the recommendations are made public on the CDC and NICE websites then patients can see what tests they should be getting and if a doctor won’t test them correctly, they can then report the doctors for malpractice.

The vast advantage that advocating for this has over wasting time advocating for different names and definitions, is that it is based on medical fact, it is in the medical text books that these disease cause the symptoms attributed to CFS and therefore should be on the lists of diseases to be ruled out. We are dealing in facts, not a bunch of unscientifically proven theories that one name or definition is better than another. I also have no doubt that the likes of Dr Mirza and Dr Hyde, who also finds that a vast percentage of people are misdiagnosed with CFS. Would stand up in any court of law and be able to prove what they are saying, because they do have the patient case notes to prove it, and I’m sure many of their patients would happily testify as well.

I have raise this issue repeatedly with members of the US CFS advocacy groups who are responsible for this letter to the DHHS, I have asked Phoenix rising to put warnings that people may be misdiagnosed on the site, I have suggested that a list of the diseases that are common causes of CFS like symptoms should be made with links to medical websites that say how to test for these conditions, and that this should be displayed prominently on the PR website, and I have suggested that the Dr Mirza articles should be placed in a prominent place on the PR website to help the misdiagnosed in finding their true diagnosis, every single time I have been ignored.

So the answer to the question do I believe that the US CFS advocacy groups have compassion for the very sick people who are misdiagnosed and are doing their best to help them, and that they are serious about separating the ME patients from the misdiagnosed so they can be studied, or getting rid of ME and CFS being seen as the same disease, the answer has to be a resounding No. If they want me to change my opinion they will have to rapidly get their A into G and start doing something about it.

All the best
I don't think anyone should accept a diagnosis of ME/CFS until they have ruled out all the other posibilities and you're absolutely right that there are many things more than should be considered before such a diagnosis is given. IN my experience, doctors in the UK dont even follow the limited things that are listed in the NICE guidelines. They aren't doing their job properly and are just keen to give you a label so their job with you is done!

I'd like to see some kind of comprehensive article on conditions that should be excluded, what they are, how you should go about that, etc. It needs to be pitched right for people with ME/CFS though and point to other more detailed data elsewhere, etc. Maybe you should blog about it? Or do an interview with Dr M. I'd read it!
 
Hi Golden, RE



So what you are saying is that even though you are relatively new to this, is that you can correctly see the truth behind what is going on and that it could be described as a crime against humanity.

It really does make you wonder then why all the so called experts and people who claim to want to help can’t get it.

The only reasons that I can work out why that they can’t get it, is that either they have a very low IQ, or that the hundreds of millions of dollars that they are receiving from research grants etc and the patients, is in some way affecting their ability to think.

Good on you Golden, nice to have someone else on board who can clearly see what is going on.

All the best

Hi Ric,

I have no problem with you or anyone showing different point of views. I feel that it is useful and informative especially when it is backed up by science, but the above statement is slanderous and false.

To state that experts/people who don't share your view have a low IQ is undignified.

To state that "they" receive hundreds of millions of dollars from research grants is a gross misrepresentation.

You make it sound like this field is full of charlatans who are out to make it rich on all the grants that are being thrown around. The reason why we are fighting so hard for awareness and advocacy is because of the opposite. No one wants to give us any funding, including the US government.
 
The spirit of what Ric said is true in my gut , my thoughts and years worth ofexperience .

Its not All but its the majority . And it's all so seriously flawed that Doctors diagnosing in this way need to be held to account .

People in the UK aren't even being tested for basics before being lobbed into the CBT groups . Here they are Actively Discouraged to seek the source of their illness - in fact they are being told to sign a form whilst on a CBT course that they must not undetake any other treatment .
 
The spirit of what Ric said is true in my gut , my thoughts and years worth ofexperience .

Its not All but its the majority . And it's all so seriously flawed that Doctors diagnosing in this way need to be held to account .

People in the UK aren't even being tested for basics before being lobbed into the CBT groups . Here they are Actively Discouraged to seek the source of their illness - in fact they are being told to sign a form whilst on a CBT course that they must not undetake any other treatment .

I wish, Golden, that it could be as simple as Rick explains.

First of all, if it would be so simple and straightforward to diagnose the "true" ME, we would not be here arguing about all this. If a simple CT or MRI of the brainstem was a real biomarker for ME, why do we need all these exclusions?

As soon as we have one real biomarker that can be easily tested, all these arguments will fall by the wayside.

Second of all, excluding other illnesses is not so simple because of many co-morbidities. One can have ME and suffer from many other illnesses. One can come out with positive test results from many of the teats that Rick mentions and still suffer from ME. This is true with any illness but, especially with a complex illness like ME. Lupus for example is similar. It too attacks the immune system and causes inflammation. It can cause arthritis, cardiovascular disease, lung involvement and many others. My mother suffered from Lupus and died at age 51 from heart failure (due to the Lupus). Since ME is a multisystem affecting illness too, it is very tricky to say that we can just look at test results and if they come out positive, this person does not have ME.
 
They will find that the CDC did not renamed ME, CFS, or invented a new illness. What they actually did was rename Chronic Epstein Barr Virus Syndrome, Chronic Fatigue Syndrome.
In the aftermath of the 1984 Incline Village ME outbreak, some researchers developed the THEORY that this post-infectious outbreak was caused by the Epstein Barr Virus. Thus they named it Chronic Epstein Barr Virus Syndrome. When their theory did not pan out, instead of doing further research to find out what was really happening with these patients, they simply renamed it Chronic Fatigue Syndrome, with all of it psychiatric implications. Thus began the almost 30 year downward slide into confusion, misunderstanding, abuse and neglect of ME patients.
 
There will never be a “test for ME which proves that one has it”,
I believe there will be, especially with all the technological advances we now have and continue to develop. I believe research, primarily privately funded, is now in the works toward that end, and more and more top level scientists are becoming interested in our cause. It may not be as simple as a single blood test because ME is such a complex disease, but we should have a definite test or series of tests to substantiate a diagnosis of ME. And that is the better way to go than trying to rule out countless numbers of other diseases. How can we even expect a very sick ME patient to be put through test after test after test to rule out EVERY possibility before we can say, "yes," you have ME and now you can be put in an ME cohort to study ME. That makes no sense to me. And that is precisely the problem with the useless "chronic fatigue syndrome" diagnosis. It needs to go, for the sake of those who have ME as well as for the patients who don't.