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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

Hi Kina,

If it requires at least 18 months of testing according to Byron Hyde to rule everything else out, therefore a six month waiting period doesn't seem like 'madness' at all. It's not like a doctor can't start any testing if he suspects ME until six months are up. I don't think it's sensible to diagnose any disease or condition until you have at least done some testing and ruled out other things.
Actually Dr Hydes recommends this as the initial tests that should be done

1. Routine CBC with sedimentation, blood smear, ferritin, and IBC. Many patients have a

significant ferritin and IBC anomaly with normal Hb and Ht.

2. Eosinophil count.

3. Before ordering B12, check with the patient, who often is consuming vast amounts of

B12 in vitamin combinations that will give abnormal highs.

4. Urinalysis and culture.

5. Immune and protein electrophoresis.

6. Immune panel only if it can be done in the immediate vicinity.

7. TSH, FT3, FT4, and thyroid antibody tests.

8. Thyroid ultrasound must be done on all patients. In the past two years, I have diagnosed

six cases of thyroid malignancy with ultrasound. Often, these patients have normal

serum thyroid tests.

9. Parathyroid Ab, Ca, and Ph.

10. Complete lipid profile.

11. HIV 1 and 2, treponema antibodies, hepatitis B (surface and core ab) and C,

toxoplasmosis, histoplasmosis, Lyme disease.

12. Tuberculin skin test for all patients who have not received immunization.

13. Stools for parasites, ova, and blood x 3.

14. SGOT (AST), SGPT (ALT), bilirubin, BUN, uric acid.

15. ANA and rheumatoid battery if suggested.

16. PA and lateral X-ray of chest and X-ray of sella tursica and sinuses.

17. Fasting and 3-hour glucose and glucose tolerance if indicated.

18. Smooth and striated muscle ab and mitochondria ab.

19. Street drug profile to include cannabis, cocaine, LSD, and so on.

20. Prostate specific antigen (PSA) on all males over 25.

Page 16 The complexities of diagnosis http://www.nightingale.ca/documents/ComplexitiesofDiagnosis.pdf

The CCC are

CBC, ESR, Ca, P, Mg, blood glucose, serum electrolytes, TSH, protein electrophoresis screen, CRP, ferritin, creatinine, rheumatoid factor, antinuclear antibody, CPK and liver function, as well as routine urinalysis.

Dr Hydes initial test are far superior to the CCC, and the people who fail these initial tests will get their diagnosis found straight away and will not have to undergo 18 months of testing.

The reason why it takes Dr Hyde so long to do his testing is not because doing this kind of testing takes that long, but the Canadian government has never put in place instructions that suspected ME patients should be tested properly to rule out other disease, and do not help him to do this, he has to send his patients to many other doctors that are friends of his to get the tests done so it takes a hell of a lot longer than it should.

The reality is that all of this testing could be done in about a month, if the Canadian Government was prepared to let it be done.

It should also be pointed out that the tests with up to date reference ranges recommended in by Dr Mirza are not included in the CCC, which means any doctor following the CCC recommendations will wrongly misdiagnose many people with ME/CFS and ruin their lives and potentially kill them.

Getting back to what this thread is actually about -- the petition. If one wants to make a simple political statement that the CDC needs to properly name ME/CFS as just ME and to use a better criteria than they are using now, then by all means sign it. Or one can get bogged down in the forever arguing about this and that which leads to nothing but a back and forth argument that goes nowhere.
This petition is not about a simple political statement that the CDC needs to properly name ME/CFS as just ME and to use a better criteria than they are using now.

It is about using a definition that says that ME and CFS are the same thing and pretending that it is called ME, which in my opinion is illogical and extremely dangerous to many people’s heath, we should not be advocating for a definition that doesn’t have anywhere near a complete testing recommendation in it to rule out other diseases, this will mean more people are likely to get misdiagnosed with ME/CFS and be denied the proper treatment they should be getting.

Actually we are not getting bogged down in arguing about this and that, we have come up with some very easy to achieve, practical, and medically and scientifically logical steps to help stop the suffering of hundreds of thousands of people, and many of the people involved in this thread are in favor of it. The problem we have is that Phoenix Rising is not responding to it!!

All the best
 
Hi Gabby, RE

Hi Ric,

I appreciate you revising your post. I am sure that you did not seek to stress me out and I know sometimes I am too serious but, then again this is a serious disease with very serious problems. Although we might disagree in our approaches I am sure that I can state that what we are both striving for is for all CFS and/or ME patients to get well.

All the best,
Gabby
Thanks Gabby, no worries, it’s all good!

All the best!!!!
 
rlc

And others

What happens when a patient has all of the tests that Dr Hyde does, passes them all, and is still left without a definitive diagnosis? I am being serious, not sarcastic. They might not have ME, but a whole lot of things not working correctly in their body, causing a whole lot of symptoms, but nothing seriously "wrong" that can be found. I have read the work of Dr Hyde and it is GREAT information about lots of tests people usually do not have done before being given a CFS diagnosis by a GP. The thing is, I have had pretty much every test that Dr Hyde runs on this patients, and everything is normal. Or "basically" normal. I have seen endos, hormone doctors, integrative meds for nutritional deficiencies, sleep doctors, infectious disease doctors, auto immune panels runs, inflammation markers, vitamin D, b12, iron, comprehensive thyroid, sleep studies, Chest x rays, Chemical profiles, CBCs, syphilis and TB testing, urinalysis, EKGs, echos, on and on!
I seem to belong to that class of patient who got mono, and my health just has been destroyed. I took high dose antivirals for a while and they 100% did improve my brain fog and neurological functioning,but nothing else. I have been told HHV6 and EBV is the root of all my ills.. Now one thing/test that is not normal, is I do have multiple different sleep disorders, including "free running sleep disorder" which is very rare, but only developed 6 years post viral illness onset, but the treatment for them has either not helped my symptoms or I simply did not respond to treatment....so there is an example of having a diagnosis, but treatment failing tonhelp.But, like I said, I have tried every treatment possible for these problems and I have not responded to treatment. The last sleep doctor I saw, a great one, was at a total loss at what to suggest to me after I told them all the treatments I have already tried. I also suffer like so many others from terrible symptoms fluctuations with my female cycle, aka terrible PMS/PMDD, but again no hormone treatments or pharmaceutical or nutritional treatments have really helped. I have tested positive for enteroviruses and have a lot of gut issues. But still, there is no treatment offered.

Sorry to be long winded, I guess my fear is instead of people like me being diagnosed as either "undiagnosble" or simple "unresponsive to treatment" we will get thrown into the psychiatric wastebasket- which is even worse than the so called CFS wastebasket because psychiatric patients are often denined ANY testing at all! (Criminal). In fact, once you get some psychiatric diagnosis, continuing to look for physical abnormalities that could be causing your symptoms and asking for further testing is labeled a sign of your "mental illness" by many doctors!

I don't know how many tests a person can have run. I honestly believe for many like me, an initial serious viral/bacterial infection somehow just changes our bodies, our immune system, changes us in some neurological way. I don't know if this theory is accepted by many. It is just my own thought.

After a decade, hundreds of tests, many miles of travel to see doctors, and lord know how much money spent, I am still confused...and sick.
 
Hi Gypsy ,

View with .... (forgot the word....)... like caution .....( edit : caution is too strong a word ... like with a touch of healthy skepticism with an enquiring mind )

test results coming back as 'Normal' This is due to reference ranges being outdated or incompetent docs not experienced with ME simply dont know what they are looking at .

There is a section on this but i have lost it .

Its awful the psychiactric diagnoses by default always at our heels - i agree .

I think of the young people now - they are put into the mixed bag of illnesses - those having cbt are getting better (some of them) ....

the ones that arent ? ... i fear they get put into the psychiactric pile - the ones with sudden ME onset and brain damage who get worse from CBT .

This was a reason I refused to complete the PACE survey by ME Association. Because it was finding CBT helped some people - they were not in their survey distinguishing diagnoses either - just was your ME diagnosed by a GP or a consultant .

It should have asked had individual questions has this test been done to rule out A-Z....

but still that would not suffice because the criteria is incomplete to rule out disease .



Also , well meaning alternative practitioners will not understand why some of their patients with 'ME' improve or get well and some dont .
 
golden

I am starting to wonder if ANY Doctors really understand why some of their ME patients improve and others dont. It seems like a crap shoot to me! Frankly, that goes for many other diseases as well. But it seems like ME patients get blamed for not getting well, for not responding to treatment. No one blames the cancer patient for not responding to chemo!

As for these outdated reference ranges, get on top of your game, doctors. I try to read all I can to know the up to date ranges, like with vitamin D, but I can only do so much. I am not an MD. Sigh.
 
Well the TRAUMA I was put through for getting my D3levels checked was disgraceful !

And their ref. ranges were rubbish .

This is why i think they are daft as a brush (is that a real phrase - not having the best cognitive day today ha ha )

They must be because if i can work some of this stuff out then why cant these supposedly highly intelligent doctors .

i agree . i think now patients are being blamed for not responding to chemo though :( read article along my travels on it .
 
The reason why it takes Dr Hyde so long to do his testing is not because doing this kind of testing takes that long, but the Canadian government has never put in place instructions that suspected ME patients should be tested properly to rule out other disease, and do not help him to do this, he has to send his patients to many other doctors that are friends of his to get the tests done so it takes a hell of a lot longer than it should.

The reality is that all of this testing could be done in about a month, if the Canadian Government was prepared to let it be done.
I would suggest you review how the Canadian system works re: medical care. We have both federal and provincial legislation. Each province has it's own health care system with it's own rules and regulations. Each province has a professional body which sets out guidelines for doctors. The 'Canadian Government' does not legislate or 'instruct' how individual diseases should be tested.

Any doctor in Ontario can order any lab test they want to. OHIP covers some of these tests, others have to paid for by the patient directly or by their insurance if they have it. A doctor can order brain scans,thyroid ultrasounds etc too, it doesn't require a specialist or another doctor.

You seem to be misinformed.
 
Wow - the title here "fatigue" is not a disease - QUITE.
 
I am just now listening to the last video where they discuss the problems with the CDC website. They are talking about inserting a black box warning with exercise. This is really a confusing message, I feel because here they are recommending exercise yet, they say it might cause harm. Why recommend it then in the first place? How would physicians looking at this understand what the message here is?
 
I am just now listening to the last video where they discuss the problems with the CDC website. They are talking about inserting a black box warning with exercise. This is really a confusing message, I feel because here they are recommending exercise yet, they say it might cause harm. Why recommend it then in the first place? How would physicians looking at this understand what the message here is?
Change the word, change the interpretation? I think in this case - though few others - it might actually work.

Exercise should become Activity and then we'd have less of a problem with it. The problem for some wouldn't go away; but I think if professionals started approaching it in this vein it might help.

GET should be Graded Activity Management that's what NICE should be really talking about in it's manual. Using that phrase throughout. This is what I have learned subsequently was intended - the interpretation of 'exercise' is the problem as is the application in some situations.

Now 'exercise' might be one of the activities but for a medical condition like ours you really need to learn GAM in order to better learn to manage your life.
 
Why is it necessary to keep the word "graded" in there? The goal cannot always be gradual improvement. I believe there's definitely a role for "exercise" in trying to keep us as functional as possible without exacerbating - but agree that the word "exercise" is a problem because it comes with so much baggage about what it "should" look like - part of that being continual increase in function.
 
"Dr Hydes initial test are far superior to the CCC, and the people who fail these initial tests will get their diagnosis found straight away and will not have to undergo 18 months of testing." rlc

This is misleading. You can fail many of these tests and still not exclude ME. In order for an exclusionary condition to be used, it has to explain the symptomology. Many of these tests can result in problems that explain fatigue, at least in part, but do not always explain other things. I would also add a sleep study to the list given. My suspicion is that homocysteine might also be important as a secondary indicator that other studies involving methylation issues might be required.
 
I am just now listening to the last video where they discuss the problems with the CDC website. They are talking about inserting a black box warning with exercise. This is really a confusing message, I feel because here they are recommending exercise yet, they say it might cause harm. Why recommend it then in the first place? How would physicians looking at this understand what the message here is?
Change the word, change the interpretation? I think in this case - though few others - it might actually work.

Exercise should become Activity and then we'd have less of a problem with it. The problem for some wouldn't go away; but I think if professionals started approaching it in this vein it might help.

GET should be Graded Activity Management that's what NICE should be really talking about in it's manual. Using that phrase throughout. This is what I have learned subsequently was intended - the interpretation of 'exercise' is the problem as is the application in some situations.

Now 'exercise' might be one of the activities but for a medical condition like ours you really need to learn GAM in order to better learn to manage your life.
Why is it necessary to keep the word "graded" in there? The goal cannot always be gradual improvement. I believe there's definitely a role for "exercise" in trying to keep us as functional as possible without exacerbating - but agree that the word "exercise" is a problem because it comes with so much baggage about what it "should" look like - part of that being continual increase in function.
If we must have goal oriented activity therapies, then I think that 'goal oriented pacing' would be my preference. But I personally find any goal orientated therapies to be patronising, and drastically fail to understand the nature of the illness, and it has been demonstrated that they can be dangerous for ME/CFS patients.
 
I have a question for Ember : who in your opinion are ME policy experts? I am not aware of any. One of our big issues is we have been focussing on the science, which after all is what will lead to a cure, but we have not been focussing much on politics. Any policy expert needs a really good grasp of politics for a start, including bureaucratic issues of the country they are in, and the technical and personal issues involved in ME. I am unaware that we have anyone who really fills that role. I think we will in time, but how that happens is by engaging in politics, not just technical issues involving goals and science.

I do distinguish here beteen policy experts, expert scientists, expert doctors and expert patients. None of these categories are synonymous. Furthermore I am less than convinced that policy experts from HIV or MS activism can help us much, as these two issues are substantially different to ME advocacy.

Sorry I'm late. Just one point from the peanut gallery.

It's all about the people.

Action needs to be taken, but it has to be the right action. Signing a petition with a few buzz words may do more harm than good if the objectives are not well thought out.

All in a perfect world of course..resources and energy being major limiting factors. :)
 
Hi Jarrod, re

Sorry I'm late. Just one point from the peanut gallery.

It's all about the people.

Action needs to be taken, but it has to be the right action. Signing a petition with a few buzz words may do more harm than good if the objectives are not well thought out.
Thank you, excellent contribution from the peanut gallery!!!

All the best
 
Hi Kina, RE

I would suggest you review how the Canadian system works re: medical care. We have both federal and provincial legislation. Each province has it's own health care system with it's own rules and regulations. Each province has a professional body which sets out guidelines for doctors. The 'Canadian Government' does not legislate or 'instruct' how individual diseases should be tested.

Any doctor in Ontario can order any lab test they want to. OHIP covers some of these tests, others have to paid for by the patient directly or by their insurance if they have it. A doctor can order brain scans,thyroid ultrasounds etc too, it doesn't require a specialist or another doctor.

You seem to be misinformed.
I recommend that you read this post from Gamboa

I actually went there two years ago and saw Dr. Bested. She was the one who diagnosed me with ME/CFS and filled in all my forms for LTD etc. She did not do very much testing however since she was only allowed to do what OHIP ( Ontario Health Plan) allows. She did very little testing for infectious diseases: just HIV, Hep A, B and Lyme. Her main focus in treatment is pacing and filling in charts to find out how much ( or little) you can do to avoid having a crash. She sent me for a sleep study ( a 2nd one) and to an allergist but that was about it. In her defense, her hands were really tied by the Ontario government rules and by the hospital as to how much she could order. Somehow Dr. Hyde gets around all that, although I know he is constantly in trouble with OHIP and the Medical License Board. I'm expecting any day now for his license to be suspended. He openly talks about this by the way.
Gamboa


Post #60 http://forums.phoenixrising.me/index.php?threads/my-visits-with-dr-byron-hyde.15437/page-3

Of course Phoenix Rising could just contact Dr Hyde amd/or Dr Bested and ask them about this situation!!

All the best
 
Hi Gypsy, RE

What happens when a patient has all of the tests that Dr Hyde does, passes them all, and is still left without a definitive diagnosis? I am being serious, not sarcastic.
As Golden has stated out of date reference ranges is a massive problem, the reference ranges for many tests have been scientifically proven to be wrong and yet the labs keep using them.

Which leads to many people being misdiagnosed with CFS.

As Dr Mirza states

“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.” See http://www.amazon.com/review/R28ZY8OYSWP0R

Which is one of the reasons why Phoenix Rising should contact him, so that we all know what the wrong reference ranges are, and can find out what tests we are being told are normal, which according to the new reference ranges we have failed.

Another major problem that I have experienced is that doctors have a habit of telling me that all my tests are fine, but when I get hold of the tests I find out that they are not. Then when I point this out to the doctors they make an excuse about some people being outside of the normal range, and they can’t think of any condition that this failed test could cause that would explain my symptoms. However when I look it up in the medical literature on the internet, I often find that these failed tests indicate the possibility of large numbers of diseases that could be causing my symptoms!

In nut shell what I m saying is that from my experience many doctors are not doing their jobs properly. And are failing to look up in the medical literature what the failed tests really mean.

Depending on what your sleep disorders are, there is the possibility that they may be an important clue as to what is going on, many people are just told they have things like sleep apnoea and are given treatment. But sleep apnoea is a symptom of many different conditions, and if the underlying problem is found then the patient can often be cured see http://en.diagnosispro.com/differential_diagnosis-for/sleep-apnea-central-type-causes/11648-154.html and http://en.diagnosispro.com/differential_diagnosis-for/sleep-apnea-obstructive-type-causes/11638-154.html

Viruses like EBV and HHV-6 do not cause major long term health problems in otherwise healthy people. Which indicates that if someone is having problems with, something like EBV, then there maybe something else going on that is stopping their immune systems from dealing with the problem.

Many of the diseases that are missed due to using out of date reference ranges have been scientifically proven to damage the immune system, it has been shown that the immune system won’t even respond to infections if someone is vitamin D deficient. The most common cause of low NK cells and altered immune function is a lack of sleep.

Partial night sleep deprivation reduces natural killer and cellular immune responses in humans. M Irwin, J McClintick, C Costlow, M Fortner, J White and J C Gillin http://www.fasebj.org/content/10/5/643

Obviously all this puts you in the situation of going oh God, how will I be able to work out what is really going on.

It would of course be a great help to you if there was information by Dr Mirza on this site that explains what the out of date reference ranges are, and what tests you should be getting.

Nobody should be getting a psychiatric diagnosis just because their doctors have failed to work out what is wrong with them!

All the best
 
Hi Alex, RE

This is misleading. You can fail many of these tests and still not exclude ME. In order for an exclusionary condition to be used, it has to explain the symptomology. Many of these tests can result in problems that explain fatigue, at least in part, but do not always explain other things.
If people are tested properly and fail tests they need to be treated for the illness indicated, this may then cure them or change their symptom pattern so much that they no longer qualify for an ME diagnosis. Many people have multiple conditions that doctors are failing to tests for and all of them need to be found.

The only way to find this out is to test people correctly and then treat all conditions that are found, once that has been done, if patients are still sick they can be diagnosed as having an illness of unknown cause, and could then be researched to find out what is wrong with them.

The testing list from Dr Hydes article the complexities of diagnosis, is not his complete initial testing criteria. It is a list of tests that he states should be considered by other doctors for all ME/CFS patients.

I think it would be very good if Phoenix Rising obtains both Dr Hyde’s and Mirza’s complete testing lists, to help us patients see what we should consider trying to get done.


From my understanding of your situation you have high iron levels and your doctor has said that you should be treated for Hemochromatosis, however you are reluctant to do this because it may affect your ME. However Hemochromatosis can cause the symptoms found in the CCC, it can if you do have it lead to permanent organ damage and death.

Which puts you in a bit of an awkward situation of not knowing if it is Hemochromatosis or ME that are causing your symptoms.

It may help you to know, I have had bloodletting done while sick, I also have all the symptoms in the CCC, it had no detrimental health effects on me at all.

All the best