Discussion of Research

[Guest guest]

(not solely referring to this group)

As I was seemingly disintegrating from ME/CFS in 1989/90 ( had pushed through

for 4 years), I discovered some articles and the CAA/CFIDS Chronicle at a local

Health Center. Oh my God, that was such a relief. At that point, there were no

Psychologizers in Dominance, or other Exploiters or Haters of severely ill

people running the show. (Visably, anyway...but this was not the CDC).

There was the Rolling Stone article called " Raggedy Ann Syndrome " , and a few

others. (One was called " Dancing with the Serpent " , by a patient). Even before

my diagnosis, and uncertain what was wrong with me, the material I read made it

quite clear that " these people " were living a nightmare, with nowhere to turn.

Were being mocked and ridiculed by family, friends and physicians, and left in

the dark, to fend for themselves, with a frightening disease .

The 1st Chronicle I saw was 1988. It, and those that followed printed all known

studies that were being done. But not only that, the theories and articles that

were being thought and written.

For a few years, the handful of dedicated researchers and Clinicians were

featured regularly with the few treatments they were trying. We all knew they

did not have the cause or cure. But the unique and empowering thing was, they

were sharing what they did have....directly with patients (Most have remained at

the top of the field since). Puttting them all in one place allowed for

comparison/cross-referencing, also.

Basically, we got to witness the Scientists' actual thinking/brainstorming

process. We got to hear them " thinking out loud " , as it were. It was educational

as far as how Scientific thinking/investigation is done in it's embryonic

stages. This was also hopeful, in that someone cared enough about our disease to

focus on it.,

And it stimulated our own thinking in new ways, some of which/whom have evolved

much further today.

We looked forward to that Chronicle and devoured it cover to cover when it

arrived.

It helped many of us to " go on " , to learn about Science and Medicine, to take

some interest in our own behalf, to participate in the discovery process. To

convey hope to the newly diagnosed, and mean it. We were not forgotten.

{Pre-Internet} In the Support group that I ran for 10 years, we agreed to bring

any and all articles from anywhere that we could find, and share and discuss

them. We had different levels of Scientific background, and processing

abilities, and all learned from each other and whatever was available.

In early 90s, CAA printed entire research issues, and one that was just on the

Brain. It told about about how memories are made and the different kinds, stages

and retrieval processes. It showed what children's and other games and exercises

could be done to help certain brain functions (spatial, sequencing, etc.).

**********************************************

In 1991? Headlines all over the world, announced " possible cause of CFS found " .

It was Elaine de Frietas's finding of an HTLV-like strand in the blood of CFS

patients. So, we all began to learn about the HTLV viruses, and more about

Science and Medicine.

This finding seemed to fade from discussion, and I thought it had been fully

dis-proven.

( I then learned Dr. de Frietas had become ill, moved, and her work also

de-funded, tho she pleaded for someone else to take it on)

***********************************************At the 1996 AACFS International

Research Conference, Scientists remarked that this was the most patient-involved

Conference they had attended. Some of them really liked that. Some, not so sure,

I'd guess.

I stood in the corridor discussing HHV6 with Dr. Ablashi? damn, sorry if I

mispelled. It was really fun, educational and inspired a sense of dignity, not

previously present, while mostly isolated in a bed, now being treated as an

idiot by most I encountered.

At a Dinner one night, I got to ask Dr. a personal CFS question I was

wondering about. I sat by Klimas in the auditorium and later stood with

others as she mused about biopsy-ing lymph nodes (which she did a few years

later). I asked Kenny de M how his 30 or so patients were doing on Ampligen. I

got to hear Jay Goldstein talk about his theories, and a couple of his patients

tell me how they were faring, and by using what.

It was incredibly powerful to witness Global brains in Science (including from

AIDS and Cancer fields) take FIVE DAYS just to discuss and share studies on US!!

And to meet Hundreds of fellow sufferers and activists. And together to listen,

tape, take notes, and learn, ask questions, right along with the Scientists.

**********************************************

I'd also attended an awards dinner another year, for Jay Levy and Rest,

and spoke to each of them. Dr. Levy (UCSF) nearly had a marker for CFS in early

90s. Enough that my friends went and " got tested " . He was not able to perfect

it, because he was promptly de-funded. I learned that most/all researchers who

took an interest in CFS, including who were tops in Cancer, AIDS research were

also suddenly de-funded.

**********************************************

Since getting my blood tested and being found postive for the CFS Ciguatera

Epitope, I was able to speak with Dr. Hokama about what he was thinking and

working on.

Out of all of these early people and their theories, 99% were not published,

double blinded, conclusive, etc. Yet, I don't think any of them have been

rendered " irrelevant " . They all contain tiny or large pieces of a massively

complex puzzle. Of course each has been passionate about their pieces, or

convinced they're onto real answers. How could they not? How could they continue

to be stimulated and study if not having the belief and goal that " this may be

it " ?

***********************************************

Somewhere in the 90s, CAA/Chronicle did a complete turn-around. No longer did

they print the " thinking in progress " kind of articles. Or, even some of the

studies at all. They, too shut the patients out of what all was going on in

various labs around the world, and the minds of those studying our disease.

It made a big lonely, gaping gap, and for pretty boring reading. It put us back

into the dark, as to what the same experts were thinking or working on. Had they

abandoned us, given up, hit the wall?

Then the Chronicle moved into " coping " , or feel good stories. And closer to

" Mainstream " , status quo reporting.

They clearly were no longer going to print theories or preliminary studies, but

only the most conservative publishings,, connecting more with the Goverment/CDC,

even leaning toward the psychological. Patients began to see them as selling

out, and suppressing information and leaving a VOID OF HOPE.

Many patients protested this, believing we are not children and deserve to know

of the works in progress, too. And deserve to have our own *witnessing and

thinking* process.

Others supported the changes, and alliance with Govt, may have felt it was

irreponsible to put out all of the preliminary, non-conclusive, non-mainstream

studies and theories.

Don't want to be bothered until they figure it all out.

Or got tired of the roller coaster that " this may be it " .

Only want to see Mainstream/CDC/NIH/JAMA level announcements.

***********************************************This reminded me of the AIDS

movement.

And by the way, as some of you perhaps, I recall when AIDS patients were a small

finite group...not millions.

And when the " cause " , modes of transmission and even the test were KNOWN before

they were publicised, and made available to all

  

The CDC knew that HIV was in the blood supply, but we (and Hemophiliacs) were

not told this..

thus, many many lives were lost.

The Epidemic was now spreading like wildfire, it seemed, and hundreds and

hundreds were dying. Gay men and others were losing 20, 30, 40 friends. This

went on and on and on.

Activists formed and were demanding to know about the research, more than they

were privy to, and more than most patient groups ever demanded.

Later,Patients at AIDS Conferences were beginning to make scenes. There was alot

of in-

fighting on this...many fearing the Scientists would get fed up and quit...we

should just let them (and CDC) do their jobs, however slowly or clandestine,

uninterrupted by " us " .

Others were fed up with the dying, and kept up the activism and scenes,

demanding answers. Some people marched in the streets. Demanding dignity,

research funds, testing, and treatment.

Blood was thrown on the steps of the NIH. {Persons in the AIDS movement had

bitter, bitter disputes, or hashing out to consensus, on how to proceed}.

I remember an article that said PWA's (people with AIDS) had different styles of

coping...some would be the activist type, or shouting in the streets...others

would be meditating on a Blue Light in their rooms. (Implied was, that all were

valid).

Some were studying the Immune System themselves, and using every wholistic

treatment and supplement they could get their hands on. {ANd still do...there

are people living with HIV for over 20 years, who have survived, even thrived,

having never taken an AIDS Pharmaceutical}

Some communities, finding some compassion and funding, created " Living

Rooms " ...Centers, calm places where AIDS patients could safely be in their last

days.

ACT-UP formed and said to the Govt/NIH/World, stop helping us die, and help us

live!!!

Besides always wanting more funding for research, and more forthcoming about it,

there was a cry for early release of treatment..that dying people deserved a

chance, and to make their own decisions on risks. Some of the laws in place now

on Compassionate early release came from this activism. {This was before

Pharmaceutical Corporations ran most of the Drug Trials, or at least before we

knew it}.

***********************************************

In the early years of , patients of CFS Specialists, such as

Dr. Cheney regularly posted on what he was studying and treatments he/they were

trying. From this generosity, many of us were able to observe, you might say,

small trials. And, if we could and chose to, try things ourselves, having some

idea of how to carefully dose, and what some outcomes might be. This is how I

found out about raising Glutathione with Immunopro, and clearing pathogens, and

I decided to do it.

Again, putting some power into our own hands...and, at the least, some of the

thinking that was going on in our behalf.

Besides the sense of comaraderie, out of the isolation.

Patients used to write out their entire protocol for others on list to know.

But some people got angry about this, and mocked and ridiculed the gratitude for

sharing preliminary findings, and that no one was finding a CURE for CFS.

The fact that Dr. Cheney, for instance, and the field in general evolves at such

a rapid rate, and the fact that preliminary findings, and patients who posted

their responses...and those who were eager to hear them...were so viciously

attacked...made Cheney patients pretty much go underground. They also did not

want to be irresponsible in giving the impression that THIS...each one's

protocol, was " THE ANSWER " for everyone. List members seemed less able not to be

in Black and White thinking...either it's THE ANSWER/CAUSE/CURE, or it's

irrelevant/irresponsible.

Thusly, yet more doors were closed to us, as to the actual thinking and

discovering of our Specialists. We may possibly only hear it if they publish, or

autor books, which is rare, and even then, may or may not actually DISCUSS it.

It depends on the dominant voices on the lists at the time.

**********************************************

A main part of the advocacy of J Fox, regarding Parkinson's, and

Reeves, regarding Spinal Cord Injury, is that they, with no Medical

background, but only as patients (with a " name " ), cast around for Scientists to

interview, to find out what studies might be languishing, for lack of funding,

that might have promise for their conditions.

I thought this was an exciting approach, and a great story in itself. This is

how they decided what to take to Congress in their pleas for funding, and to

other patients and populace to inspire hope.

It is from this that Reeves repeatedly said that he and others would

walk again, and J Fox intends to be around for a cure. Is this

irresponsible? Is this empowering?

***********************************************

Somewhere back there, another National ME/CFIDS/CFS group formed that is all

volunteer and mainly patients. Besides advocating for many individuals in legal

and other crises, and writing a pamphlet for schools, about ME/CFS children,

they decided to raise funds for some of the multiple un-known/un-funded studies

sitting around in labs across the world.

Their Medical Director, (a patient, I believe) and others, comb through

thousands of papers, communicate with multiple Scientists personally, to try and

connect dots that may be relevant to us, and re-generate interest and funds for

studies that may provide missing pieces of ME/CFIDS/CFS.

Once, they found through the Freedom of Information Act, that an NIH researcher,

Sidney Grossberg, had discovered and patented a virus...the JHK?? virus, he,

believing it to be the cause of CFS!

I googled this virus and sure enough, there it/NIH was...very surreal.

This org.'s " dots " and funding, is how it came to be that University of

Hawaii's Dr. Hokama , the world's leading Ciguatera expert...found the CFS

" Ciguatera Epitope " in blood of majority tested. (Including my own, and a number

on our lists). His work, seeking cause and treatment, continues today, with One

Million dollars granted from the NIH.

Again, some patients were very happy that an organization was printing in their

Forum, information found nowhere else, that was not revealed in any mainstream

Medical Journals or only peer-reviewed studies.

But this Org, as stated by themselves, are not Professionals, but patients, with

varying degrees of Scientific background. And certainly are clearly not slick PR

professionals.

They often say they will be revealing the answer, or major pieces to CFS

....soon. Some have found all of their funded studies exciting to follow and

discuss. And would like to continue to do so. Many people continue to join and

read their Forums.

Others are so enraged at being on the CFS/Cure roller coaster, or irritated with

their " non-professionalism " , or carrying major personal baggage from past

associations, etc., etc,,that those patients who are grateful to them and/or

interested in their work...are mocked and ridiculed for anything other than

denigrating threads about them.

As a matter of fact, a certain sort of " red-baiting " goes on now, around the

world, mainly by a *very small* handful of people.. If someone has not joined in

on the vilifying, or has ever said a positive word about their work, or. god

forbid, wants to discuss their announcements, they are immediately " suspect "

of...???

idiotic cheer-leaders, double identities, unsavory motives, some sort of enemy

camp.

Naive newcomers innocently inquire about them {and others in CFS field} and are

given a mixture of true and utterly false denigrating information. All, again

blocking/shutting down discussion that patients have every right to have, about

Scientists that are studying US...what is in our blood, what may be causal,

co-factor, or result from our disease.

Since when do we, as patients, have to be professionals, reveal intimate

information, agree about everything with each other, justify/defend or vilify

entire Organization of patients, just to have a damned DISCUSSION about Science

FOCUSED or relating to US????

This is particularly disturbing to me in todays' Political atmosphere of

" terrorist-baiting " , suppression of Science, Government and Media who like to

do all of our thinking/information-disseminating for us.

Additionally, I find it especially distasteful to bully and dominate the lists

with these attacks against patients who have CLEARLY STATED (on and off-list),

that they want to discuss the revealed research findings...and who it is WELL

KNOWN have cognitive and articulation impairments and divided attention

disabilities. Those less ill, or not ill at all are fully aware that CFS

patients can eventually or quickly be scrambled, worn down and shut up.

If Findings or Organizations who announce them are irrelevant or skewed, it will

become evident, IMO, by a full and open discussion of the details by those who

desire it. For those who have CLEARLY STATED they do not desire it, for the Love

of God, delete and get out of the way.

I have written this entirely from my own head, heart, and memory, and hope it is

accurate enough for the purpose intended. I am not trying to assess or conclude

all facts about any Org. or study here. I do not care if anyone holds negative

views or if said Findings or Orgs end up falling flat.

I am not trying to open any can of worms or pit people against each other.

I am risking extreme personal attack (now and in the future), tho I pray I

don't deserve it, nor it will happen.

We, and other patient groups have a long history (having been hung out to dry),

of looking beyond what " Officials " and the Dominant ($$, cognitive, and

otherwise), offer us. Our lists contain long threads on theories and studies

that are not even on ME/CFS disease.

I am very afraid and very offended that ME/CFS PATIENT voices are being shut

down from within our " own " circles.

And want us to re-claim the open space for discussing non-psych work that is

looking

specifically at US.

Thank you,

Katrina