XMRV and Thyroid Cancer?

[dschlindwein]

I'm not one to defend the CDC, but on this specific point, no researcher would include people with untreated Thyroid disease, because a low thyroid function mimics the symptoms of ME/CFS, and it is not possible to have a diagnosis of ME/CFS while you have a low thyroid function.
Anyone with a low thyroid function needs to be treated quickly, as the symptoms can become very severe.

A conundrum. I will assume you are correct in saying that low thyroid function mimics the symptoms of ME/CFS, so including people with untreated thyroid problems but no ME/CFS into an ME/CFS study would be wrong. (But you know how utterly stupid those Conspiracy to Deny and Conceal (CDC) studies would still be even if they didn't exclude true ME/CFS patients who happen to have low thyroid function.) However, I believe it is harmful (and potentially VERY harmful) for ME/CFS patients to be on thyroid hormones. Again I refer to Paul Cheney's videotaped lectures where he lists T3, Cortef (cortisol), and meds like Provigil and Ritalin as just about the worst things a doctor can give to an ME/CFS patient. And his reasoning makes sense to me.

I'm not quite sure what you mean when you say that it is not possible to have a diagnosis of ME/CFS while you have low thyroid function. Again, I think that most of us who have found our way to the Phoenix Rising forums are quite sure that what we are housebound with is ME/CFS, and that most of us have abnormal thyroid function. And probably most of us have found a doctor who has at least enough knowledge to have correctly diagnosed us with ME/CFS.

 

[Bob]

A conundrum. I will assume you are correct in saying that low thyroid function mimics the symptoms of ME/CFS, so including people with untreated thyroid problems but no ME/CFS into an ME/CFS study would be wrong. (But you know how utterly stupid those Conspiracy to Deny and Conceal (CDC) studies would still be even if they didn't exclude true ME/CFS patients who happen to have low thyroid function.)

There is a difference between untreated thyroid dysfunction and treated thyroid dysfunction. If a person with suspected ME/CFS has an underactive thyroid function, then I think that the thyroid needs to be treated before ME/CFS can be confirmed. People should be treated for an underactive thyroid because they would be very ill. If you are talking about subclinical thyroid dysfunction, which I suspect is what Cheney is talking about, then this type of subclinical disorder would not have been excluded by the CDC study anyway.

However, I believe it is harmful (and potentially VERY harmful) for ME/CFS patients to be on thyroid hormones. Again I refer to Paul Cheney's videotaped lectures where he lists T3, Cortef (cortisol), and meds like Provigil and Ritalin as just about the worst things a doctor can give to an ME/CFS patient. And his reasoning makes sense to me.

Someone who has a clinically underactive thyroid function will be very ill, and there's no question that they should be treated with thyroxine, immediately.
I haven't looked into Cheney's work with thyroid function, and so I don't know exactly what he's referring to, but maybe he's talking about a thyroid dysfunction which is undetectable by normal tests, or a subclinical dysfunction, in which case the CDC would not have excluded these patients anyway.

I'm not quite sure what you mean when you say that it is not possible to have a diagnosis of ME/CFS while you have low thyroid function. Again, I think that most of us who have found our way to the Phoenix Rising forums are quite sure that what we are housebound with is ME/CFS, and that most of us have abnormal thyroid function. And probably most of us have found a doctor who has at least enough knowledge to have correctly diagnosed us with ME/CFS.

I mean that if someone is tested to have a thyroid dyfunction, then I think that the diagnostic criteria for ME/CFS do not allow for ME/CFS to be diagnosed until the thyroid is successfully treated... Once the thyroid disorder is treated, and the thyroid test results are at normal level, then ME/CFS can be diagnosed if there are remaining symptoms. In other words, with the official diagnostic criteria, ME/CFS should not be diagnosed until other diseases and illnesses have been ruled out as a cause of the symptoms. (I haven't checked the facts out on this, but it is my understanding of how the diagnostic criteria work.)

I suspect that Dr Cheney is talking about a subclinical thyroid disorder that doesn't show up on standard tests, and so this exclusionary principle would not apply to his patients. But I'm not familiar with his work.

 

[Bob]

"I'm sure that many of us are whacked out in our thyroid function. Paul Cheney has talked about this in his videotaped presentations. He believes that our bodies downregulate thyroid hormone production in order to force us to limit our physical activity. As we all know, physical activity makes us sicker, so our bodies are trying to protect us from it by downregulating thyroid hormone production or otherwise messing with our thyroid function. Therefore, abnormal thyroid function should be considered a symptom of CFS, not an exclusionary condition".

I think that the official diagnostic criteria for ME/CFS state that other diseases and illnesses, which may cause fatigue, should be ruled out, or treated, before giving an ME/CFS diagnosis. This makes sense because a good doctor should check for all possible causes of the patient's symptoms before giving a diagnosis of ME/CFS.
Other possible causes of fatigue, for example, might be cancer, depression, gut disorders etc.
I'm not sure if the Canadian consensus criteria insist on this exclusionary principle. Maybe they don't need to, because the criteria which they use are more specific, and more exclusionary anyway.

I'm not familiar with Cheney's work, but normally, you would expect a thyroid disorder to be treated before diagnosing ME/CFS.
After treatment for the thyroid disorder, a patient might find that they don't have any symptoms, and that they purely had a thyroid problem.
But if symptoms remain, then a diagnosis for ME/CFS can be given.

I suspect that Cheney is talking about a subclinical thyroid disorder, that doesn't show up on standard thyroid tests, in which case it's a different matter.
I know that when I was ill with a low thyroid, the symptoms were severe, disruptive, and in addition to the ME symptoms. But it was easily treated, which then left me purely with ME symptoms.

I really doubt the CDC will ever get this issue in my lifetime. But I believe it to be true because as I stated below, most if not all of my endocrine values have always been sub-clinical (slightly low) as a result rather than cause of this illness. One of the reasons I believe it to be result rather than cause is that taking hormone supplements such as Cortisol (for adrenal insufficiency....another exclusionary Dx) will make me feel better temporarily, but does nothing to expand my stress tolerance abilities....I will still crash the same. In fact, the hormone supplementation will push me into a crash, even if I force myself to lay on the bed and have no stress at all. This says to me that the sub-clinical endocrine values must be result rather than cause....otherwise I would improve rather than worsen on the supplementation. I have tried this experiment many times over the years, and it's always the same result. So, I agree with Dr Cheney on this issue. But, I'm all for having these endocrine tests done to rule out the possibility of an undiagnosed problem. I'm currently giving T3 a try for the first time. My GP has prescribed it to reduce the RT3. It gives me more energy for sure, but I need more time to see how well it will help long term.

If you are referring to subclinical symptoms only, then this category would not have been excluded from the CDC study anyway.

I agree with what you are saying about subclinical hormone disorders being as a result of the ME... I suspect that my clinical thyroid dysfunction was also a direct result of the ME, or an associated pathogen (such as HHV-6, XMRV etc).

My underactive thyroid disorder had fatigue as a symptom (in addition to the fatigue of the ME) (the thyroid fatigue felt strangely very similar to the ME fatigue but the pattern of the fatigue was subtly different), but the thyroid symptoms disappeared as soon as the thyroid disorder was successfully treated, and this sorted out my thyroid symptoms, but it did nothing for the ME symptoms, which carried on as usual.

 

[dschlindwein]

I suspect that Dr Cheney is talking about a subclinical thyroid disorder that doesn't show up on standard tests, and so this exclusionary principle would not apply to his patients. But I'm not familiar with his work.

I am a patient of Dr. Cheney's. Perhaps he does treat more severe thyroid dysfunction, but he has deliberately kept me off thyroid supplementation, even though my tested values fall into the abnormally low range. As I wrote in an earlier post, his idea is that lowered thyroid hormone production is an attempt by the body to make you slow down and rest, which is a good thing, since physical activity can be very harmful in the context of ME/CFS.

As for diagnosis of ME/CFS, it is not reasonable to regard abnormal thyroid function as exclusionary since abnormal thyroid function is often really a consequence of ME/CFS (as explained above), and there are other tests which would differentiate ME/CFS from primary thyroid disease. For example, it is common for ME/CFS patients to have abnormally low NK cell function. Also, bicycle ergometry with gas analysis will reveal very low oxygen utilization and early crossing of the anaerobic threshold in ME/CFS patients. In my case I crossed into anaerobic metabolism as soon as I started pedaling on the stationary bicycle, and with that result I was awarded SSDI without even having to appeal. RNaseL is often abnormally elevated in ME/CFS, and so are the indicators of oxidative stress. Diastolic dysfunction in someone under age 70 is also indicative of ME/CFS. Sooner or later (fingers crossed) we will have good diagnostic testing for XMRV, though by then that retrovirus might be pretty widespread among people who don't have ME/CFS.

 

[Bob]

I am a patient of Dr. Cheney's. Perhaps he does treat more severe thyroid dysfunction, but he has deliberately kept me off thyroid supplementation, even though my tested values fall into the abnormally low range. As I wrote in an earlier post, his idea is that lowered thyroid hormone production is an attempt by the body to make you slow down and rest, which is a good thing, since physical activity can be very harmful in the context of ME/CFS.

Hi dschlindwein,
When I had a clinically low thyroid function, I was very ill with it. I had all sorts of weird symptoms and some of them overlapped with my ME symptoms, so it was very hard to understand what was going on. I got ill with bronchitis which lasted for six months and it didn't clear up until they spotted my low thyroid levels, and treated me. Low thyroid also causes severe fatigue which made me think that the ME was deteriorating.

When you say that your thyroid function falls into "the abnormally low range", do you mean that it is a subclinical disorder? I suspect this is the case and that's why he doesn't feel the need to treat you. There is a difference between having a clinical diagnosis, and slightly low thyroid levels which fall within the acceptable clinical range.

As for diagnosis of ME/CFS, it is not reasonable to regard abnormal thyroid function as exclusionary since abnormal thyroid function is often really a consequence of ME/CFS (as explained above), and there are other tests which would differentiate ME/CFS from primary thyroid disease. For example, it is common for ME/CFS patients to have abnormally low NK cell function. Also, bicycle ergometry with gas analysis will reveal very low oxygen utilization and early crossing of the anaerobic threshold in ME/CFS patients. In my case I crossed into anaerobic metabolism as soon as I started pedaling on the stationary bicycle, and with that result I was awarded SSDI without even having to appeal. RNaseL is often abnormally elevated in ME/CFS, and so are the indicators of oxidative stress. Diastolic dysfunction in someone under age 70 is also indicative of ME/CFS. Sooner or later (fingers crossed) we will have good diagnostic testing for XMRV, though by then that retrovirus might be pretty widespread among people who don't have ME/CFS.

You are not distinguishing untreated thyroid dysfunction from treated thyroid dysfunction. There's a big difference. The diagnostic criteria do not exclude treated thyroid dysfunction or subclinical thyroid dysfunction, but only untreated clinical thyroid dysfunction.

I suspect that if you had a clinical thyroid disorder (i.e. not subclinical) then Dr Cheney would be obliged to treat you for it, and you would be suffering from very disturbing symptoms, and so you would insist on treatment anyway.

For the purposes of this discussion, and for diagnosing ME/CFS, we need to distinguish between sublincial and clinical thyroid disorders, and treated and untreated thyroid disorders.

 

[aiden424]

Had an ultra sound of my thyroid today at my endocrinology doctor's. He said I have no functioning thyroid left, just a blob of scar tissue. He said it was eaten up from hoshimotos, that it is dead, but he wouldn't remove it. He said most of the time hoshimotos doesn't destroy the thyroid as fast as it did mine. Well I think I would feel better if it was removed. I'm worried that it could turn to cancer, or is that impossible since it's now just a lump of scar tissue?

Kathy

 

[Cloud]

The best I recall, the CCD doesn't say anything about exclusionary diseases disqualifying a diagnosis of ME/CFS. The list is only provided to minimize overlooking a treatable disease. http://www.mefmaction.net/documents/me_overview.pdf (Exclusions list bottom page 2).
The CDC and SSA/SSDI criteria for exclusionary diseases and how they affect a diagnosis of ME/CFS would be a different story of course.

I believe that Dr Cheney bases a lot of his ideas on a belief of a Cardiac Insufficiency in ME/CFS. While I disagree that this illness, at least for me, has any kind of cardiac etiology, I do agree that our systems are deliberately slowing themselves down for self preservation. I would appreciate any more info or links on why Dr Cheney would resist treating an endocrine insufficiency.

 

[Bob]

The best I recall, the CCD doesn't say anything about exclusionary diseases disqualifying a diagnosis of ME/CFS. The list is only provided to minimize overlooking a treatable disease. http://www.mefmaction.net/documents/me_overview.pdf (Exclusions list bottom page 2).
The CDC and SSA/SSDI criteria for exclusionary diseases and how they affect a diagnosis of ME/CFS would be a different story of course.

Thanks for the clarity Cloud... I may have misrepresented the diagnostic criteria, in terms of excluding other illnesses... I was making assumptions, rather than checking out the facts.
But from my own experience, I know that it makes sense for a clinician to rule out all other causes of fatigue before giving an ME/CFS diagnosis.
If they are a good clinician then they will check for other fatigue causing diseases.
But, yes, as you, and others have said, clinicians should be able to diagnose ME/CFS in its own right these days, using specific diagnostic criteria such as 'post exertional malaise', and also biomarkers such as cytokine dysregulation.
Unfortunately most family doctors haven't got a clue!

Cheney's approach to hormonal disorders baffles me.

 

[Bob]

Had an ultra sound of my thyroid today at my endocrinology doctor's. He said I have no functioning thyroid left, just a blob of scar tissue. He said it was eaten up from hoshimotos, that it is dead, but he wouldn't remove it. He said most of the time hoshimotos doesn't destroy the thyroid as fast as it did mine. Well I think I would feel better if it was removed. I'm worried that it could turn to cancer, or is that impossible since it's now just a lump of scar tissue?

Kathy

Hi Kathy,
Sorry to hear about your thyroid problems.
Personally, I would prefer not to have an operation on my neck if I didn't have to, as operations are never risk free, and a thyroid operation runs a risk of affecting your vocal cords.
I'm afraid that I haven't got a clue about your question... Do you know if there is a link between hoshimotos and cancer?
Maybe it's something you could investigate, and then if there is a risk, you could ask for a periodic scan to put your mind at rest.
Take care,
Bob

(Just my thoughts... I have no medical knowlege or training.)

 

[katiemoomoo]

Thyroid cancer and cfs/me

My friend was diagnosed fibromyalgia and ME, she had a big lump on her neck that came back negative. they biopsied and came back inconclusive. so they took it out and now 3 years later is thyroid cancer. shes having her thyroid gland taken out on the 2nd of next month.

 

[Cloud]

Bob, I agree with you on the "treated vs untreated", and "sub-clinical vs clinical". It makes good sense that is how practitioners should be addressing the exclusionary diseases (Addisons, Hep C, etc) found co-morbid with ME/CFS. Treating the "clinical" insufficiency may end up ruling out, or at the least relieving some of the symptoms of ME/CFS. But, as many have reported, treating a "sub-clinical" insufficiency may not be a good idea. Regardless, an exclusionary disease should be listed as co-morbid if it's been adequately treated and one still meets the criteria for a ME/CFS diagnosis....something I would expect from the enlightened docs such as Peterson and Cheney, but not the SSA who would likely be quick to rule out ME/CFS in the presence of an "exclusionary" disease regardless of it's clinical severity and treatment history.

 

[Impish]

Here is an article in which Sandra Ruscetti is a contributing author: Ex Vivo and In Vivo Biological Effects of a Truncated Form of the Receptor Tyrosine Kinase Stk When Activated by Interaction with the Friend Spleen Focus-Forming Virus Envelope Glycoprotein or by Point Mutation
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC387688/

If I understand it correctly, they basically found that gp55 which is an envelope gene in the mouse virus SFFV interacts with a protein in certain mice and causes cancer. The protein it interacts with in mice is sf-Stk. This family of protein's includes the human protein c-Met. Not all mice have sf-Stk and so some mice can be infected with SFFV and have nothing happen.

Part of the recent patent filed by WPI is for using the antibodies for SFFV gp55 to detect XMRV. Also Sandra Ruscetti mentions that one of her pieces of present research is to use SFFV and its effects in mice to figure out how XMRV affects people.

In humans c-Met has been found overexpressed in thyroid cancer: Overexpression of the c-MET/HGF receptor gene in human thyroid carcinomas
http://www.ncbi.nlm.nih.gov/pubmed/1334253

So to sum up my understanding. In mice if you are unlucky enough to have the genetics that causes you to have the protein sf-Stk and then you are infected with SFFV it causes the protein to activate and you get cancer.

What I am guessing that Sandra Ruscetti, Frank Ruscetti and WPI are thinking is that in humans if you have the genome that produces a form of MET that can be activated by XMRV you get something... Maybe Cancer, maybe CFS/ME. It could be that virus plus particular genetic targets causes different effects (which relates to some work that Kerr was doing).

I now also understand the potential linkage to Autism in that: MET and autism susceptibility: family and case–control studies (published in Nature)
I am guessing that they are thinking that in Autism certain genetic variations in the MET protein may cause XMRV to activate it and cause Autism. In this case the mothers are probably infected.