Good News From The NIH..Patient Advocate for NIH State of Knowledge Workshop

[rwinsmom528]

I am strongly opposed to autism activists being so closely involved in ME/CFS issues, particularly at this formal advisory level. (Conversely, I also believe ME/CFS activists should not be on advisory panels for autism spectrum disorders.)

I agree, and I even have a son and a brother on the Autism spectrum. No offense taken here.

 

[Sean]

I agree, and I even have a son and a brother on the Autism spectrum. No offense taken here.

Thanks. I also have autism spectrum disorders in my family, and have helped care for those people, so I am quite aware of the problem and I am certainly sympathetic to those dealing with it.

 

[lancelot]

I suspect this will not be a popular view among some here, but I am strongly opposed to autism activists being so closely involved in ME/CFS issues, particularly at this formal advisory level. (Conversely, I also believe ME/CFS activists should not be on advisory panels for autism spectrum disorders.)

Both scientifically and politically it would be a very serious problem trying to fight on two controversial medical fronts at once.

.

i also agree and have believed that these are totally different and unrelated diseases, but didn't want to get bashed here for having this opinion. it's good to see others see the light and are brave enough to speak out.

 

[*GG*]

Whoever is nominated, this fact needs to be emphasized as loudly as possible. We need doctors and others to know that by pushing us to do things causes permanant damage. We need doctors and others to remind us to take it easy and not stress oursevles instead of pushing us to our deaths.

We also need to have the mortality of this disease studied. Diseases recognized as fatal get much more attention than others. Ours is fatal, but there are not many out there who want to admit it.

Very good points. That is why I had disabliltiy testing done, I don't want to work until I am bedridden! What would be the poing of that?! When I had disability testing done last year, and my sister asked the researcher about mortality issues. Something like if we had shorter life spans, I believe the researcher said NO, but I don't think that there is really any good research in this regard? Am I wrong?

GG

 

[taniaaust1]

The Steering Committee members include: Nancy Klimas, Lenny Jason, Suzanne Vernon, Pat Fero, Mary Schweitzer, and Ken Friedman. A group of 8 NIH WG members and an AHRQ member have also volunteered to help put the meeting together.

Wow!!! that is all I can say. Pat Fero and Mary Schweitzer are two of my top three nominatees if i'd been able to put in a nomination, so im real glad to see them there.

What a great list of people the NIH has choosen to accept to represent us. Wow!! They are obviously serious about listening to our imput

 

[shannah]

When I had disability testing done last year, and my sister asked the researcher about mortality issues. Something like if we had shorter life spans, I believe the researcher said NO, but I don't think that there is really any good research in this regard? Am I wrong?

GG

Hi ggingues,

There was a well formulated reply by CBS the other day in another thread to this question.



Is there actually evidence that people are dying from CFS? I don't mean suicides, but disease-related deaths that can be proven?


"Very little has been done in this area. The only article of note was by L. Jason and it is limited - "The authors analyzed a memorial list tabulated by the National CFIDS Foundation of 166 deceased individuals who had had CFS." This is clearly a non-representative sample it but at present, ME/CFS is never listed as a cause or a contributing factor to death. An additional problem is the cohort issue. ME/CFS by what definition?

That said, the following paragraph concerns the ages of death of those patients included in the Jason study:


If one examines national rates of death for these conditions, the ages of death for these three conditions [heart failure, cancer and suicide] among the patients with CFS are considerable earlier. The median age of death for cancer in the United States is 72 (Reis et al., 2003, versus an average age of 47.8 for the CFS sample), the average age of death for suicide in the United States is 48 (Centers for Disease Control, 2003, versus an average age of 39.3 for the CFS sample), and the average age of heart failure is 83.1 (CDC, 2003, versus an average age of 58.7 years for the CFS sample). What this suggests is that those from this memorial list who did die of cancer, suicide, and heart failure were considerable younger than what would have been expected from the general population, which means that CFS might have increased the risk of death for at least this sample.

http://www.theoneclickgroup.co.uk/do...20Patients.pdf

Health Care Women Int. 2006 Aug;27(7):615-26.
Causes of death among patients with chronic fatigue syndrome.

Jason LA, Corradi K, Gress S, Williams S, Torres-Harding S.
DePaul University, Chicago, IL 60614, USA. Ljason@depaul.edu
Abstract

Chronic fatigue syndrome (CFS) is a debilitating illness affecting thousands of individuals. At the present time, there are few studies that have investigated causes of death for those with this syndrome. The authors analyzed a memorial list tabulated by the National CFIDS Foundation of 166 deceased individuals who had had CFS. There were approximately three times more women than men on the list. The three most prevalent causes of death were heart failure, suicide, and cancer, which accounted for 59.6% of all deaths. The mean age of those who died from cancer and suicide was 47.8 and 39.3 years, respectively, which is considerably younger than those who died from cancer and suicide in the general population. The implications of these findings are discussed. "

 

[IamME]

Hi ggingues,
There was a well formulated reply by CBS the other day in another thread to this question.

Is there actually evidence that people are dying from CFS? I don't mean suicides, but disease-related deaths that can be proven?

http://www.meactionuk.org.uk/Vade_MEcum.htm

There were no fatalities during the period January August 1955, but one patient who had exhibited the illness died the following year. Death was found to be due to numerous small haemorrhages in the mid-brain. Post-mortem histopathology report from this (female) case stated:

There are in the entire diencephalon, particularly round the third ventricle, numerous small haemorrhages, which extend into the adjacent parts of the mid-brain. Similar haemorrhages can be seen in the corpora mamillare. The haemorrhages are mostly around the small vessels but some are also to be seen in the free tissue. This is a significant finding.

lymphocytes in the cerebrospinal fluid congregate in the perivascular (Virchow Robin) spaces of the brainthese findings do suggest that the disease may involve the perivascular spaces of the brain

dilatation of the Virchow Robin spaces could also suggest intracranial arterial or periarterial pathology, in particular, one would expect to find a congregation of lymphocytes in the perivascular spaces around the central nervous system arteries(Wallis) revealed an artefact that is in an anatomical position similar to that suggested by MRI studies"

re: the Los Angeles 1934 epidemic: The blood vessels throughout the nervous system were distended with red blood cellsthe most characteristic change was infiltration of the blood vessel walls (see: The present consensus on MRI in ME/CFS. Royce J Biddle. In: The Clinical and Scientific Basis of ME/CFS. ed: BM Hyde; The Nightingale Press, Ottawa, Canada 1992).

CFSAC Testimony: Former Physiotherapist and Occupational Therapist
Canadian/American Dual Citizen, Alberta, Canada October 11, 2010


http://www.meactionuk.org.uk/Byron_Hyde_Nightingale_Research_Foundation_Paper.htm

Cause of death has been attributed to orthostatic cardiac irregularity. It is also during this phase that CNS deaths occurred in the Cumberland Epidemic, in the Akureyri epidemic, and in one of the Mediterranean epidemics.

Probably the best descriptive definition of M.E. is found in Ramsay's book mentioned earlieri or in the Doctoral Thesis of Dr. Andrew Wallace,vii a Scottish physician who immigrated to Adelaide, Australia. Wallace's thesis discusses an epidemic in Cumberland in Northern England. It is unfortunate that more M.E. physicians have not read it. This thesis is important since it not only represents one of the best descriptions of the epidemic M.E. disease but also documents deaths associated with this illness.

Documented deaths have occurred in several M.E. epidemics, but are best documented in the Cumberland epidemic and were well known in the Akureyri epidemic. All of these deaths involved CNS injury. The Akureyri epidemic involved at least 7 prepubertal children in Friedrikshavn who developed M.E. followed by Parkinson-like illness and died. x Documented deaths in sporadic cases of M.E. are known, but it is my experience that treating physicians often become vitriolic when the deaths are attributed to M.E by the families of the deceased. M.E. and CFS may be the only illnesses in history from which some physicians believe the patient is invulnerable to death.

M.E. is also distinguished from CFS in that multiple organ involvement, seizure activity, death, and autonomic nervous system dysfunction occur in M.E. and by definition, these simply do not occur in CFS.

http://www.25megroup.org/Information/Medical/dowsett%27s/Late%20effects%20of%20ME.htm

The death rate of 10% occurs almost entirely from end-organ damage within this group (mainly from cardiac or pancreatic failure).

http://www.meresearch.org.uk/information/keypubs/EvME.pdf

Mortality/morbidity: [Enterovirus]
Mortality : In 1783 cases [adults] - no of deaths 111, 6.2%. Of these deaths: 53% were cardiac - 15% were retroperitoneal tumours. 12% were CNS tumours. The remainder were multiorgan failures. [Richardson]

Extracts from Magical Medicine: How to Make a Disease Disappear, by Professor Hooper

In 1992, Professor Hugh Fudenberg from South Carolina (a pioneer of clinical immunology and one of the most distinguished minds in the field, being awarded The Medal of the Institut Pasteur at the age of 32; he was also a Nobel Prize nominee) stated that there is a greater death rate than normals in the same age range (The Clinical and Scientific Basis of Myalgic Encephalomyelitis Chronic Fatigue Syndrome: ed. BM Hyde, published by The Nightingale Research Foundation, Ottawa, Canada, 1992: page 644).

On 18th June 1995, Consultant Radiologist Dr Eric Booth died from ME/CFS aged 48 years, having had ME/CFS for 16 years. Four years before he died, Booth wrote: I have been very seriously ill for the last five years, being totally bedridden (but) am unable to convey this to my medical colleagues. I have come to believe that physicians suffer from compassion fatigue (BMJ 28 October 1995:311). The autopsy findings were disturbing but were suppressed; Booths next of kin was warned by the Official Solicitor that action would be taken against her if she divulged the post-mortem findings, to the extent that she was reduced to a state of chronic fear.

A 2005 autopsy in the US showed oedema of the lower limbs; the alveolar spaces of the lungs were filled with inflammatory cells and there were small emboli scattered throughout the arteries; there was marked congestion of the liver and spleen; the bowel was ischaemic; there was mild inflammation of the kidneys; there was also evidence of rhabdomyolysis (the breakdown of muscle fibres resulting in the release of muscle fibre contents into the circulation, some of which are toxic to the kidney); the bladder showed a hyperplastic epithelium; the thyroid showed colloid filled follicles, with scattered dystrophic calcifications and calcification of the small arterial walls; the right occipital lobe of the brain showed areas of degeneration and degenerated astrocytes, and the white matter surrounding this defect appeared puckered.

 

[justinreilly]

IamME: Thank you for this info. I wasn't aware of it.

I'd like to add that approx. 10%, I believe, of the tahoe cohort has contracted normally vanishingly rare (other than in AIDS and ME) lymphomas. In Osler's Web, it's noted that in the early eighties (just prior to the AIDS and ME epidemics) the chance of an American getting one of these lymphomas was approximately 30 Million to One- only about 10 people in the entire US got one every year. Double that number (19) have gotten them among the approx 200 patient tahoe cohort. Prof. Seymour Grufferman, perhaps the world's foremost cancer epidemiologist (and holder of three doctorates in epidemiology) applied several times to NIH in the 80's for a grant to study the link and was turned down as was everyone who applied to NIH for a grant to study ME in the eighties.

 

[shannah]

I can't put my fingers on the report I read, I think last spring, of an autopsy done on a woman in her late thirties. She was 'declared to be in good health except for CFS' and the cause of death was listed as SADS (Sudden Adult Death Syndrome).

Perhaps a thread on this topic should be started on this if anyone's up to it.

 

[*GG*]

Hello Shannah,

this link to a PDF is not working: http://www.theoneclickgroup.co.uk/do...20Patients.pdf

Can you provide a better one? Also, It would be great if it can be downloaded!

thanks!

 

[Dolphin]

Hello Shannah,

this link to a PDF is not working: http://www.theoneclickgroup.co.uk/do...20Patients.pdf

Can you provide a better one? Also, It would be great if it can be downloaded!

thanks!

Try this: http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/Causes of Death - CFS Patients.pdf