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

Firestormm · Jun 19, 2013

rlc said:
...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. ..

Absolutely bloody not and over my dead body! I am sure you can do this on your own and others can to. Just as anyone here can from any other 'expert'.

I already bankrupt myself from pursuing 'expert' bloody 'help'. And I am not about to start giving free press to any more of these people.

CLINICAL TRIALS! Where is Hyde's published work? All these patients he's seen - where are his figures? What's his treatment?

Don't answer that. I really do not want to know. I have already read up on the man as can anyone else.

Undisclosed · Jun 19, 2013

rlc said:
Hi Kina, RE

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

Your initial statements are still incorrect related to the Canadian government.

A doctor in Ontario can order tests that are not covered by OHIP, the patient gets billed directly. I know this to be true because my daughter has had tests that are not covered by OHIP. I also know this to be true because I worked within the Ontario health care system prior to becoming ill. What OHIP does is pay for tests they deem 'medically necessary', if you want other tests a doctor can order them and you or your insurance pays for them.

Dr Bested was working out of the Woman's College Hospital in Toronto and was likely constrained by the rules/regulations set forth by the hospital -- many hospitals have their own labs. A doctor who runs their own personal clinic would have greater freedom to order tests from private labs of their choice whether OHIP approved or not because they are not constrained by the policies of hospitals and/or clinics.

You could contact Dr Hyde or Dr Bested (she's in British Columbia now) or Health Canada or OHIP if you would like further information.

Kina.

It would be nice if we could actually discuss the topic of this thread which is Unger's response to the letter sent by NAAME.

snowathlete · Jun 19, 2013

golden said:
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 .

Really? WT* ?!?!
Could you point to sources? Any of the ME/CFS orgs in the UK responding to that?

rlc · Jun 19, 2013

Hi Kina,

You say

What OHIP does is pay for tests they deem 'medically necessary'

But it seems to be the case that the OHIP does not deem that testing for all the conditions that cause the symptoms found oin CFS and ME is medically necessary. Which means, that patients are forced to get tests done by other means, which takes more time than it should! Which is what I meant when saying, that the tests that Dr Hyde does, could be done in a lot less time,

I would like to point out that what I have been saying is very relevant to this topic I am pointing out the obvious flaws in the Letter to the DHHS, (which is what Dr Unger is replying to) i.e the CCC says that ME and CFS are the same, and pretending that it is an ME definition is not helpful!

The Phoenix Rising teams opening post of this tread is misleading it has made people think that the Fatigue is not a disease statement, is in some way attributed to Dr Unger, which it isn’t, I would like to point out that neither the CDC or NIH or DHHS have ever said that Fatigue is a disease, in relation to CFS, they say that Fatigue is one of many symptoms of CFS, The fatigue is not a disease statement has nothing to do with the topic of this tread, so using the fatigue is not a disease statement to incite people to sign the petition could be seen in my opinion to be very misleading.

Dr Ungers has replied, as one of the people the original letter was addressed to, was Dr. Thomas Frieden of the CDC. People may or may not like Dr Ungers reply, but the letter was sent to Secretary Sibelius, Dr. Howard Koh, Dr. Thomas Frieden and Dr. Francis Collins at the Department of Health and Human Services (DHHS).

How about waiting for their replies, as they may be a lot more satisfactory, before using Dr Ungers reply to incite people to sign the petition, it would after all make more sense to wait until this information had been received, as it may be very positive, in which case everyone is wasting their time signing and talking about the petition. It may prove to be completely unnecessary.

When the topic of this letter to the DHHS was raised on this Forum, others stated that they did not want people to just be against it, without putting forward some other positive suggestions, which is what I have done, which is leading to a discussion about these suggestions. Which many people are finding very informative!

However what is not helpful is members of the Phoenix Rising board making suggestion that imply that people who are not in favor of this petition are some kind of insurgents trying to start a civil war.

All the best

snowathlete · Jun 19, 2013

rlc said:
Hi Snowathlete, RE

If I write a blog about it, all that will happen is that it will get lost amongst all the other posts in a very short period of time.

I have however asked Mark of the Phoenix Rising Board in post 138 on page 7 of this tread, to get Phoenix Rising to contact Dr Mirza, for whom I have provided the contact details, and ask him if he will contribute a extensive testing recommendations list with up to date reference ranges, that can be made available on the phoenix Rising site with large warnings that people maybe misdiagnosed, and have explained that this information can also be made available on all the US CFS advocacy groups websites, and that it can be sent to the likes of Kathleen Sebelius to show how inadequate the CDC recommendations are and ask for them to be changed.

It appears to me that, Mark has developed the same selective blindness that I have encountered from the Board of Phoenix Rising over the years, every single time I have raised this issue, and they has failed to reply. No doubt the excuse is that they are oh so busy, however as the Phoenix Rising projects that are listed here http://phoenixrising.me/about/projects and the endless stream of articles produced by the Phoenix Rising team none of which provide any information on how people should avoid being misdiagnosed with CFS, do not actually do anything to help stop people being misdiagnosed with CFS, I did state that this is a matter of life and death and that it should be prioritized above everything else.

I have since then noticed Goldens post about a interview with Dr Byron Hyde which say,

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.

As Dr Hyde is stating that he is willing to make his working protocol available I will repost my post to Mark including that Dr Hyde can also be contacted and asked if he will provide information on the tests that should be done to rule out other disease, and wait and see if the observational skills of Mark and the Phoenix Rising team have improved.

All the best

Hi Mark, RE

This does not have to be the “massive job” that you are under the impression that it will be. Displaying a permanent large warning that people may be misdiagnosed in a Very prominent place on the PR site is very easy to do. The links to the articles by Dr Mirza are in my posts in this tread, and it will not take much effort to place them with the warning that people may be misdiagnosed.

I recommend that Phoenix Rising contacts Dr Mirza and asks if he would be willing to compile a more detailed list of diseases that should be ruled out, with the tests that are needed and what the correct reference ranges are. The patients could then take this information to their doctors and because it is coming from Doctor Mirza who is the Assistant Professor of Internal Medicine at Auburn Community Hospital, Auburn New York, it is very likely to be looked at by the patient’s doctors.

Judging from the obvious passion that Dr Mirza has for stopping people being misdiagnosed with CFS when they really have other known diseases and are suffering needlessly. I would say that there is a very high chance that he will help. This information could then also be sent to Kathleen Sebelius US secretary of the DHHS, asking her to investigate why the CDCs recommendations are so limited in comparison to Dr Mirza’s.

Dr Shirwan A Mirza can be contacted at

Auburn Community Hospital auburn New York

17 Lansing Street Auburn, NY 13021

Office Phone: 315-253-2669

And

Diabetes, Metabolism & Endocrinology

399 Grant Avenue Rd Suite 1

Auburn, NY 13021

(315) 253-2669 (Office)

(315) 282-0077 (Fax)

Dr Byron Hyde has stated in a 2012 lecture

“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.”

This shows that he is willing to provide information on the testing that he uses to tests for other diseases in patients diagnosed with CFS.

So Dr Hyde should also be contacted by Phoenix Rising and asked if he will supply this information

Dr Byron Hyde’s contact details are

Mail

Dr. Byron Hyde, Chairman

121 Iona Street

Ottawa Ontario

K1Y 3M1

Canada

Fax (613) 523-1958

E-mail

This information can then also be put on the websites of other CFS advocacy groups such as PANDORA, Chronic Fatigue Syndrome, Fibromyalgia, & Chemical Sensitivity Coalition of Chicago, Chronic Fatigue Syndrome/Fibromyalgia Organization of Georgia, Inc. The Fibromyalgia-ME/CFS Support Center, Inc. The Rocky Mountain CFS/ME & FM Association. Speak Up About ME, Wisconsin ME/CFS Association, Inc. As these advocacy groups are closely connected to the CFIDS Association of America they could ask them to put the information on their website. This would be extremely easy for all these advocacy groups to do, because all they would have to do is put a permanent large warning on their websites that people maybe misdiagnosed with a link to the information on the Phoenix Rising website

As the CDC refuses to do anything about their feeble recommendations on how to rule out other diseases that cause CFS like symptoms, then the US advocacy groups must do their utmost to solve this problem, or else many thousands of people will keep suffering and dying needlessly.

As some of the conditions that are misdiagnosed as CFS are life threatening, I think that Phoenix Rising should priorities this above whatever other projects are taking up their time.

This is literally a matter of life and death and should be attended to immediately!!!!!

All the best

I agree that there are a lot of other topics being covered, but that's the whole value to an organization like PR. There are lots of topics and people can follow those they feel are most important. As with any topic on here that gets blogged about, if it's important, interesting, well-written and appropriately objective, then it gets more attention than less well-done posts. I'd have thought it would get some attention myself, but the proof would be in the pudding.

For me, I saw certain topics not being covered as much as I felt they should be so I volunteered to write on them. Asking a group of volunteers who are already working themselves sick every day to go contact someone else and engage with them themselves, is naïve at best.
Besides you clearly already know a lot about it, by the sounds of things, and feel it is so important, so who is better placed to do this than you? Also, a lot of people seem to be under the impression that people at PR work for them or something…people are un-paid volunteers, so is it really fair to complain that they don’t do more on topics that you deem more important than whatever they may be spending their time on? I don’t think it is.

I don't agree that there is selective blindness going on from Mark and the PR board either. Quite the opposite actually. It's really tough to run PR particularly because it is objective and publishes a wide variety of views and has to cater for a large community with multiple views on things. What you seem to be asking them to do is the opposite of that - to contact one single group and get a list established by them and promote it, when that's not how PR can operate because it needs to be more balanced than that.

Having a dig about the PR team telling you they are snowed under already, really isn't cool actually. It's oh so easy from outside to suggest that it's an excuse and make out that it's not true, but if you knew from actually being involved what the truth of things was and how bloody hard people work, you wouldn't say these things. It's really the worst. Seriously! Perhaps you just said it rashly, but I'd ask you to think about that a bit and consider apologizing about that cause it is really unfair and inconsiderate.

There is already some provision of misdiagnosis information through some of the existing articles btw - see my zoonotics series for example, which is all about that really, so it's not like PR are avoiding the topic, or not promoting it. In fact, if I remember Mark’s earlier comment, they would love to cover this area more! You have an open invitation.

If you truly think that it is a matter of life and death (and I see what you're getting at there, and agree to a point) then get involved in making the change you're talking about happen! You could write an article on this topic, including views from others to make sure you're presenting something objective (as you pointed out, no one wants to see selective blindness), give people references to further reading like Hyde's list and others if they exist. It would be a step toward what you seem to be saying you want - that's surely better than wasting time complaining that someone else isn't doing it.

I mean, let me give you a concrete example: I wanted an article about Borrelia and Bartonella on here because I feel a portion of us have those things and don't know it. It was gnawing at me that a portion of us were living our lives in this misery when they could get tested for these things, find they have them and then get treatment and regain some or all of their lives. God knows that I wish someone else had written about it four years ago when I first got diagnosed and started looking on sites like this - maybe I would even be healthy now, who knows! But I didn't complain no one was telling people about it, I got on and did it myself, surrendering the limited time and energy I had to resolve the issue. I suggest that you do the same - as I said, I would look forward to reading such an article.

snowathlete · Jun 19, 2013

taniaaust1 said:
I too would reallly like if PR can contact Dr Brian Hyde and then do an article on things which should be ruled out on the website (with any other things which can be thought of) with a link in a prominant place. It would be very valuable. PR is probably more likely to be able to get this info from Dr Hyde then general members of the public if we contacted him .

All the interviews that I have done myself, I have just emailed them myself as a writer and asked for their input. They are always receptive to having stuff written about them. You can never guarentee that an article you write will be published, but you inform them of your intention to get it published wherever you are thinking of - though its often a good idea to check for interest first from wherever you want to publish your work.

snowathlete · Jun 19, 2013

Gypsy said:
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 MAJOR sleep dysfunction, 4 different sleep disorders, but the treatment for them has either 1. Not helped or 2. Not improved my symptoms. I feel like maybe, just maybe, my sleep disorders are at the root of most of it me at this point (I have, amongst others, "free running" sleep disorder, also,called non 24 sleep/wake disorder. I only developed this 6 years into my illness, and it is considered very rare) . 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.

My view, for what it's worth, is that checking for other misdiagnoses is a good strategy because a portion of patients do turn out to have other stuff. I try to focus on things that match my symptoms best (and specifically the more obscure ones that arent necesarily common in ME/CFS), that have treatment outcomes (there is some value to finding you have X, but if X has no treatment then there is a clear limit to the value you can gain from finding that out) and which are not too expensive to test for, or difficult/painful etc. Ultimately I think I would stop somewhere along the road, once I felt I had ruled out the most likely candidates and at least I would know that I had taken sensible steps and done my best to challenge the waste-basket diagnosis that ME/CFS often is.

I especially hate the idea of not bothering to run the basic, fairly cheap and easy tests, for things like Borrelia, which though not perfect by any means, do come up positive in some patients, and then finding out ten, twenty, thirty years down the line, or maybe never, that I had Borrelia, but didn't check!

... In thirty years time if i turn out to have some more obscure, very rare disorder then I could live with having missed that.

alex3619 · Jun 19, 2013

rlc said:
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.

Hi rlc . This essentially happened to my CFS doc in 1993! He was running a lot of exclusinary tests, and we had gone part way through the process, when a massive fine was imposed on him for performing unnecessary tests. This was under the Holmes criteria though. It seems that CFS was a diagnosis of exclusion, but that exclusion is not permitted. This is bad medical management from the insurance industry and government. Since ME is continually conflated with CFS these problems apply to ME. Indeed I recently had my hospital rewrite my diagnosis from ME to CFS without even consulting me. Alex.

alex3619 · Jun 19, 2013

rlc , haemochromatosis at my iron levels is asymptomatic. Treatment is precautionary. I have been pushing for treatment for years because it will increase my oxidative stress, however small, and under guidelines for doctors in Austraia they cannot treat iron levels this low. My concern over treatment can be managed by proceeding cautiously, though again that may run into regulations as I may only be permitted treatment a limited number of times per year, I have not investigated this.

I do agree we need to have things excluded, as many as possible. This is just good sense. Its also in violation of world-wide medical policy. The accountants are in charge, not scientists.

Undisclosed · Jun 19, 2013

rlc said:
Hi Kina,

But it seems to be the case that the OHIP does not deem that testing for all the conditions that cause the symptoms found oin CFS and ME is medically necessary. Which means, that patients are forced to get tests done by other means, which takes more time than it should! Which is what I meant when saying, that the tests that Dr Hyde does, could be done in a lot less time,

There was absolutely no comment by me regarding what tests that OHIP deems medically necessary in the case of ME or CFS. You seem to be waffling over this issue and making up things about both the Canadian government and our OHIP system. As far as the time issue goes, many complex issues takes months to sort out even using tests totally approved by OHIP. Do you have any idea of the wait time in this Province for scans is, to see specialists, to even get an appointment with your doctor which last on average for less than 10 minutes due an extreme doctor shortage. In the city of 750,000 people that I live in 20,000 do not have a doctor and have to go to the walk-in clinic which is manned by one doctor who seems to lack even rudimentary knowledge of simple medical problems or they go to the Ambulatory Care Clinic in the hospital which is equipped to deal with acute health problems. There are very few doctors in the province taking on new patients. The waiting list is long and if you end up with a doctor you hate, you are screwed. The system is overloaded, money is short and all patients are getting a short-shrift not just ME patients. In light of this, most of Byron's Hydes suggestions regarding ME patients is frankly unrealistic.

I am not going to respond to the rest your post because it's just going off-topic more.

BTW -- I am not on the Board of Phoenix Rising. My activity is restricted to moderating the forums and forum organization so it's pointless to direct issues related to the Board at me.

Nielk · Jun 19, 2013

Dr Unger states in her letter:

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.

...other similar unexplained chronically fatiguing illnesses such as ME!!!!!!!!!

She is saying there is CFS which is an unexplained fatiguing illness and then there is ME another unexplained fatiguing illness. I wish she would explain how they differ and how many people have been diagnosed in the US with this unexplained fatiguing ME illness???

golden · Jun 19, 2013

snowathlete said:
Really? WT* ?!?!
Could you point to sources? Any of the ME/CFS orgs in the UK responding to that?

Been thinking. I dont think I can - just two seperate 'joe bloggs' have told me.
Its disturbing isn't it!

rlc · Jun 20, 2013

Hi Gabby RE

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.

I think the most apropriate response to Dr Ungers reply, should be, Dr Unger as you very clearly in your reply state that ME and CFS are different conditions, why is there no government spending on ME, why has the CDC not provided the medical community with a definition of ME, and why has the CDC not made the medical community aware of ME or done any thing to stop its spread, this is an obvious breach of the CDC pledge to the American people see http://www.cdc.gov/about/organization/mission.htm which must be corrected imediatly.

All the best

biophile · Jun 20, 2013

I posted more from rlc's link to the CDC webpage:

http://www.cdc.gov/about/organization/mission.htm

-----

Vision, Mission, Core Values, and Pledge

CDC Vision for the 21st Century

“Health Protection…Health Equity”

CDC Mission

Collaborating to create the expertise, information, and tools that people and communities need to protect their health – through health promotion, prevention of disease, injury and disability, and preparedness for new health threats.

CDC seeks to accomplish its mission by working with partners throughout the nation and the world to

• monitor health,
• detect and investigate health problems,
• conduct research to enhance prevention,
• develop and advocate sound public health policies,
• implement prevention strategies,
• promote healthy behaviors,
• foster safe and healthful environments,
• provide leadership and training.

Those functions are the backbone of CDC′s mission. Each of CDC′s component organizations undertakes these activities in conducting its specific programs. The steps needed to accomplish this mission are also based on scientific excellence, requiring well-trained public health practitioners and leaders dedicated to high standards of quality and ethical practice.

CDC Core Values

Accountability — As diligent stewards of public trust and public funds, we act decisively and compassionately in service to the people’s health. We ensure that our research and our services are based on sound science and meet real public needs to achieve our public health goals.

Respect — We respect and understand our interdependence with all people, both inside the agency and throughout the world, treating them and their contributions with dignity and valuing individual and cultural diversity. We are committed to achieving a diverse workforce at all levels of the organization.

Integrity — We are honest and ethical in all we do. We will do what we say. We prize scientific integrity and professional excellence.

CDC Pledge

CDC pledges to the American people:

• To be a diligent steward of the funds entrusted to it.
• To provide an environment for intellectual and personal growth and integrity.
• To base all public health decisions on the highest quality scientific data, openly and objectively derived.
• To place the benefits to society above the benefits to the institution.
• To treat all persons with dignity, honesty, and respect.

-----

Much of the above information is a joke when reading about the CDC's sordid history with the Lake Tahoe outbreak of ME (which Reeves personally dismissed as "hysteria"), the questionable construction of CFS and the CDC sanctioned biopsychobabble that followed, wasting money on poorly conducted studies, the misappropriation of millions of dollars of funds allocated to CFS, etc. I realize the CFS division is just a small plaything for them compared to their other programs, but now whenever I hear about the CDC in the news or even in TV shows responding to some disease outbreak, I cringe at the idea of the CDC being the first line defense for anything.

http://en.wikipedia.org/wiki/Peter_Principle

Nielk · Jun 20, 2013

rlc said:
Hi Gabby RE

I think the most apropriate response to Dr Ungers reply, should be, Dr Unger as you very clearly in your reply state that ME and CFS are different conditions, why is there no government spending on ME, why has the CDC not provided the medical community with a definition of ME, and why has the CDC not made the medical community aware of ME or done any thing to stop its spread, this is an obvious breach of the CDC pledge to the American people see http://www.cdc.gov/about/organization/mission.htm which must be corrected imediatly.

All the best

Dr. Unger here seems to be putting CFS and ME on the same footing; she characterizes both as unexplained fatiguing diseases.

Firestormm · Jun 20, 2013

Nielk said:
Dr. Unger here seems to be putting CFS and ME on the same footing; she characterizes both as unexplained fatiguing diseases.

Yeah I don't think we can read too much into that. I mean even Nightingale seem a tad 'cautious' in places or is that realistic?

Known in the United States as Chronic Fatigue Syndrome and in Great Britain both as Myalgic Encephalomyelitis and Post-Viral Fatigue Syndrome, M.E./CFS has provoked a chronic disabling illness in an estimated 1,000,000 persons in North America and Europe.

Nielk · Jun 20, 2013

Firestormm said:
Yeah I don't think we can read too much into that. I mean even Nightingale seem a tad 'cautious' in places or is that realistic?

The point I am trying to make is that if the CDC thinks that CFS and ME are interchangeable fatiguing illnesses as she states, why put up such a wall as far as changing the name from CFS to ME?

Firestormm · Jun 20, 2013

Nielk said:
The point I am trying to make is that if the CDC thinks that CFS and ME are interchangeable fatiguing illnesses as she states, why put up such a wall as far as changing the name from CFS to ME?

OK. I am not sure she is - not specifically - it's all 'official-speak' is all. But I need to come back and re-read her letter Nielk cause I'm overdue a rest and in danger of not making much sense.

rlc · Jun 20, 2013

Hi Alex, RE

This essentially happened to my CFS doc in 1993! He was running a lot of exclusinary tests, and we had gone part way through the process, when a massive fine was imposed on him for performing unnecessary tests. This was under the Holmes criteria though. It seems that CFS was a diagnosis of exclusion, but that exclusion is not permitted. This is bad medical management from the insurance industry and government. Since ME is continually conflated with CFS these problems apply to ME. Indeed I recently had my hospital rewrite my diagnosis from ME to CFS without even consulting me. Alex.

Yes it is certainly an appalling situation, it is in my opinion totally immoral to say that CFS is a diagnosis of exclusion and then effectively ban doctors from excluding diseases that cause the symptoms of CFS. Many people pets get more extensive testing from vets, then some people get before they are given a CFS diagnosis.

It is a situation that I find completely abhorrent.

RE

haemochromatosis at my iron levels is asymptomatic. Treatment is precautionary. I have been pushing for treatment for years because it will increase my oxidative stress, however small, and under guidelines for doctors in Austraia they cannot treat iron levels this low. My concern over treatment can be managed by proceeding cautiously, though again that may run into regulations as I may only be permitted treatment a limited number of times per year, I have not investigated this.

Sorry I’m not sure of the details of how high your iron levels are, or what the guidelines for Doctors in Australia are. But I do know that any excess iron can have a potentially devastating effect on people’s health, it can accumulate in endocrine glands such as the pituitary gland and cause major problem. The Iron overload site that I put links to recently in the tread about Hemochromatosis that you were involved in, says that high levels of iron must be treated immediately as it will have nothing but a detrimental effect on the patients. Not sure on what the Australian recommendations are but I would imagine they are higher then the Iron overload site recommends?

I

do agree we need to have things excluded, as many as possible. This is just good sense. Its also in violation of world-wide medical policy. The accountants are in charge, not scientists.

In my opinion, it is also a violation of people’s basic human rights, and a Crime against humanity!

All the best

rlc · Jun 20, 2013

Hi Gabby, RE

The point I am trying to make is that if the CDC thinks that CFS and ME are interchangeable fatiguing illnesses as she states, why put up such a wall as far as changing the name from CFS to ME?

Dr Unger is saying

“CFS and other similar medically unexplained chronically fatiguing illnesses such as ME, fibromyalgia syndrome, neurasthenia, multiple chemical sensitivities, and chronic mononucleosis.”

She is not saying “that CFS and ME are interchangeable fatiguing illnesses”

Similar does not mean they are the same or interchangeable

She includes Chronic Mononucleosis here, sure it has similar symptoms to CFS, but it is a completely different disease with a known cause, Epstein Barr virus. If someone wanted to change the name Chronic Mononucleosis to ME, I would also be objecting to that, because it is not medically correct.

The CDC has stated for many years on its website that ME and CFS are different diseases with different symptoms, it has 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.”

Neurological and muscular signs makes it a completely different disease to CFS. As they say, “ME has a case definition distinct from that of CFS.”

The point that I’m trying to make is that the CDC has publically made a pledge to the American people. This although I’m not certain of the intricacies of US law could more than likely to be considered a legally binding contract? Therefore if anyone in America, who cares about this issue is a lawyer, or if an individual or organization was to get a lawyer. Then the CDC could possibly be challenged on failing to take action about ME since the mid 1980s? It may be possible to file a class action lawsuit? This could possibly also include failing to provide correct information on how to exclude other disease that cause the same symptoms as CFS?

Believe me I am not trying to be difficult about this issue; I have far better things to do with my time. But the fact that the US ICD codes recognize ME as a real disease that is distinct to CFS, is a massive advantage for ME patients in the US, they could possibly legally challenge the government on why nothing is being done about it!

The problem for ME patients has been people saying that it is the same as CFS, and everyone being muddled together as one group called CFS, which has lead to all the money going to CFS research.

Because the CCC says that CFS and ME are the same disease, and it is a definition of a fatiguing illness, not a neurological and muscular illness, it has a few ME symptoms in it, but it is basically a CFS definition. What is going to be achieved by just pretending that the CCC is a ME definition, is that instead of having all the ME and CFS patients muddled together and calling it CFS, we will just have all the ME and CFS patients muddled together and it will be called ME, So the problem of all the patients being muddled together will remain, all that will be achieved is that the label will have been changed.

Because the plan is to get rid of CFS as well, all the advantages of having ME and CFS recognized in the US ICD codes as different diseases will be lost.

ME and CFS are not from a medical stand point the same disease, the CCC says that they are, its own authors have said that the CCC is wrong and written a new definition that is just for ME the ICC, so this petition is arguing for us to ignore the views of the principle authors of the CCC.

To my mind the problem is that all the ME and CFS patients and all the misdiagnosed people are all muddled together, changing the label on this problem is not going to solve the problem. If ME and CFS remain separate then people can campaign for something to be done about the officially recognized different disease ME, which may lead to some progress, having the same problem with a different label won’t.

I do not have ME, I have the symptoms in the CCC but I do not have ME. If more research is done on ME it will not be of any benefit to me whatsoever. I’m doing this because I care about people and want to see the many thousands of people who are suffering terribly helped.

I’m just stating that ME and CFS are recognized as different diseases, which is a good thing, because it can be used to stop all the patients being muddled together. I m also wanting more testing to find the misdiagnosed because this will help those people and will also greatly reduce the number of people all being muddled together with the wrong label.

Changing the label will only keep all these people with different illnesses muddled together, which makes effective research impossible.

All the best