ME - Cancer Link Study Needed

[justinreilly]

The single study I think we could get the biggest bang for the buck for would be an epidemiological study of the link between previously vanishingly rare non-hodgkins lymphoma and ME.

For example, I believe 19 of the approximately 200 person Tahoe cohort have gotten either Burkitt's or Mantle Cell Lymphoma. To highlight how extraordinary this is, according to Osler's Web, in 1982 only one person in California contracted Burkitt's Lymphoma.

Seymour Grufferman wanted to do such a study early on, as reported in Osler's Web, but couldn't get funding.

Benefits of a study

I think that:
(1) the cost would be reasonable,
(2) any proper study would show an extremely strong association and
(3) the association would make us much more fundable because of a rock solid link to cancer.

Don't know if Grufferman or anyone else would be interested in doing such a study. CBS and Otis are starting a grass-roots science funding website where we can contribute directly to researchers we like. I would love to see someone doing this kind of study get some funding from there or anywhere else.

Does anyone know Grufferman or anyone else that could be helpful? Has Peterson been interested in arranging such a study? Any feedback?

 

[alex3619]

Hi justinreilly, my recollection of cancer rates in the Lake Tahoe cohort is that it is much higher now. Anthony Komoroff has also been calling for cancer-CFS epidemiology since the 80s and has been ignored.

Don't forget it was the cancer (including mantle cell lymphoma) that got Judy Mikovits interested and led to the possible XMRV association. What is holding this back of course is the lack of definitive proof that XMRV testing is reliable.

So in short I completely agree with you Justin. This should have been done decades ago.

Bye
Alex

 

[justinreilly]

Hi justinreilly, my recollection of cancer rates in the Lake Tahoe cohort is that it is much higher now. Anthony Komoroff has also been calling for cancer-CFS epidemiology since the 80s and has been ignored.

Don't forget it was the cancer (including mantle cell lymphoma) that got Judy Mikovits interested and led to the possible XMRV association. What is holding this back of course is the lack of definitive proof that XMRV testing is reliable.

So in short I completely agree with you Justin. This should have been done decades ago.

Bye
Alex

Very interesting. What are the figures you know; do you have any cites. what i am referring to is what i remember from Oct. 2009 CFSAC talk by Dan Peterson.

You aren't saying that this epidemiology is being held back by the XMRV test issues, right?

Does Komaroff still want to do such a study?

 

[alex3619]

Hi justinreilly, off hand I do not recollect the source of my information, my memory on these kinds of things sucks! That is why I did not cite the figures I do recollect - I don't trust my memory. I will have a look around and see if I can find it though. The XMRV test problem is stopping specific cancer-XMRV research in a big way, in my opinion. A reliable test is crucial. This in no way should affect general epidemiology. I can't speak for Komaroff, but I think if he were no longer interested himself, if funding were available he would support it. Bye, Alex

 

[WillowJ]

like Alex I don't recall where I read this, but I thought there was a cancer study that was having publication issues.

I agree totally that this is an important topic. We do have a small amount of data to go on, can't think what it is just now. (Sorry, I'm not much use these days.)

 

[Hope123]

I wrote Grufferman and Paul Levine (who was also involved in many CFS studies in the 1990s and is now at George Washington University School of Public Health) about this and other issus in the past but have never received a reply.

There are a few papers by them from the past -- more than 15 years ago IIRC.

But you can always try again.

Forgot to add, Michael Snyderman, an oncologist who has both ME/CFS and leukemia, might be looking into this right now. He's at SUNY Stony Brook in NY. Here's some old info:

http://www.cfscentral.com/2010/09/dr-michael-snydermans-one-man-drug.html

 

[cigana]

Hi Justin,

I think this is a very good idea - like you say it's the perfect bang-for-buck.

It might be worth contacting Dr Peterson as I think it was he who first noticed this, so he may be aware of others taking this up. Other than that it might be worth emailiing a long list of as many epidemiologists that we can find. If you want to try this approach (if you find nothing from other avenues of inquiry) I would help draft a letter.

What an important (and cheap) paper that could be...

 

[justinreilly]

Hi justinreilly, my recollection of cancer rates in the Lake Tahoe cohort is that it is much higher now. Anthony Komoroff has also been calling for cancer-CFS epidemiology since the 80s and has been ignored.

Don't forget it was the cancer (including mantle cell lymphoma) that got Judy Mikovits interested and led to the possible XMRV association. What is holding this back of course is the lack of definitive proof that XMRV testing is reliable.

So in short I completely agree with you Justin. This should have been done decades ago.

Bye
Alex

I'm talking about lymphoma's link to ME, not to xmrv (which should also be studied).

 

[justinreilly]

I wrote Grufferman and Paul Levine (who was also involved in many CFS studies in the 1990s and is now at George Washington University School of Public Health) about this and other issus in the past but have never received a reply.

There are a few papers by them from the past -- more than 15 years ago IIRC.

But you can always try again.

Forgot to add, Michael Snyderman, an oncologist who has both ME/CFS and leukemia, might be looking into this right now. He's at SUNY Stony Brook in NY. Here's some old info:

http://www.cfscentral.com/2010/09/dr-michael-snydermans-one-man-drug.html

Hope, thanks for contacting them. I sent an email to Prof. Snyderman. I'll post here if i get a response.

 

[justinreilly]

As reported in Osler's Web, the cluster of ME and cancer that got Grufferman interested was in the NC Symphony. The ME and cancer then spread to the Pittsburgh symphony, with Grufferman was going to use as a control group!

I think that it would be best to try to interest cancer epidemiologists in this since there is actually funding for that as opposed to ME. Anyone have any connection to one or a cancer research funding org.

Can people pls put any other info and cites on this topic here? I want to write up a little copy on this topic with solid cites to put in the "Shocking Truth" documents idea i've got going on another thread.

 

[taniaaust1]

I remember reading that there was a group of CFS/ME patients who were getting a certain rare cancer at the rate of 1 in every 16 i think it was. (It may of been a thyriod cancer? im not sure now)

 

[In Vitro Infidelium]

The single study I think we could get the biggest bang for the buck for would be an epidemiological study of the link between previously vanishingly rare non-hodgkins lymphoma and ME.

For example, I believe 19 of the approximately 200 person Tahoe cohort have gotten either Burkitt's or Mantle Cell Lymphoma. To highlight how extraordinary this is, according to Osler's Web, in 1982 only one person in California contracted Burkitt's Lymphoma.

The lack of large scale epidemiological studies of M.E/CFS is certainly inhibiting understanding of the illness, but Im not sure that the cursory illness mapping that you suggest would be an advance.

Certainly incidence of Non Hodgekins Lymphoma (NHL) at a rate of 10% amongst M.E/CFS sufferers would be highly significant if demonstrated across a large population, but local clusters are not a good basis on which to argue for a more generalised prevalence. NHL has an assumed genetic component, something which would very likely generate local cluster predisposition.

That a viral illness has a role in NHL is also widely accepted (endogenous NHL in African populations is strongly associated with EBV) and while it would certainly be interesting to know if the Tahoe CFS sufferers have a higher incidence of NHL than the local population who were exposed to the assumed common infection in the early 1980s, any analysis is likely to say far more about NHL than M.E/CFS. For example lifestyle of chronically ill people could be considered a potential disposing factor for NHL (note: Im not saying it is !!!! just that it would be an obvious route of research).

I understand the argument about funding, but coat-tailing CFS on cancer research could have a lot of downsides a minnow swallowed by a whale - for instance. My take is that large scale epidemiology is a sellable approach because without it service providers and Governments have no basis for adequate provision planning, this is inefficient and costly in itself because either people are being left unsupported, or they are being treated expensively and inappropriately.

If cancer shows up on large scale epidemiology as a statistically significant association (recognising of course that diagnosis of cancer would exclude a co morbid diagnosis of CFS !) with M.E/CFS, then of course that would have to be examined further, but there is much more that we need to know about people with M.E/CFS than whether we are more likely to get cancer or not. The predisposing factors and incidence of all illnesses in the M.E/CFS population needs to be established it is that science which should have been done 20 years ago, rather than have two decades of fiddling around at the margins and fussing about definitions.

IVI

 

[carolwxyz99]

The incidence of Breast Cancer in those with ME/CFS would also be a good study. I know lots of people with ME/CFs who have had breast cancer including myself. Also some breast cancer tumours have been found to have XMRV in them. A private cancer doctor I saw in the UK thought there were a lot of people with breast cancer who also had ME/CFS and that there was a link.

 

[taniaaust1]

I did a search trying to find something for someone else and I seen this thread.
Thought I'd add the info I found the other day onto this here.


http://www.alasbimnjournal.cl/alasbimn/index.php?option=com_content&task=view&id=136&Itemid=94 You may find this Dr Byron Hyde study interesting thou it isnt the study I seen in the past UNLESS the one I read in past was the final outcome of this (I think I clearly remember the results were 18-19% had thyriod cancer and I think it was a ME/CFS specialist who did the study).

"100 patients whom I have investigated for (ME/CFS)[3], with or without associated Fibromyalgia Syndrome (FS), I have found that 6% of these patients had thyroid malignancy. In each of these patients the diagnosis was made by ultrasonography and needle biopsy under ultrasonography. This was followed by surgical removal of the thyroid, and each case the malignancy was confirmed.

These findings would suggest that 6% of the ME/CFS patients seen, or 6,000 cases per 100,000, had a confirmed thyroid malignancy. Unfortunately, these figures may be conservative since we are in the process of obtaining needle biopsies on six further cases of these first 100 patients. In addition, we have not yet performed thyroid ultrasound on all 100 cases. We are in the process of further investigation of those patients who had not yet been investigated by thyroid ultrasound. "

compared to a rate of 0.5 to 3 patients per 100,000 in the general non ME/CFS population

"Conclusions
1. ME/CFS patients who demonstrate the following:

a.Abnormal SPECT scans involving cortex and subcortical perfusion defects,


b.Thyroid malignancy,


c.Whose fatigue syndrome does not recover after appropriate surgery and thyroid hormone replacement, and


d.Have a tendency for cervical vertebrae pathology may constitute a chronic subgroup of ME/CFS patients.
2. ME/CFS patients should all be evaluated by thyroid ultrasound and, where appropriate, needle biopsy to rule out thyroid malignancy and other thyroid pathology. The fact that ME/CFS patients may have normal serum chemistry for TSH, FT3, FT4 and normal Microsomal and Thyroglobulin antibodies does not eliminate thyroid disease.

3. A chronic Hashimotos Encephalopathylike syndrome may be concurrent with ME/CFS patients who have thyroid malignancy or multinodular thyroid disease or other thyroid pathology and chronic subcortical & cortical brain SPECT changes. Non-recovery after thyroid malignancy surgery and adequate thyroid hormone replacement may be related to this chronic ME/CFS encephalopathy.

4. ME/CFS patients without thyroid malignancy yet with treated thyroid pathology, and who have not recovered from their fatigue syndrome, may also have a similar NeuroSPECT brain dysfunction. "