Re: Last word to Professor Albert Cilia-i on Maltese ME Awareness Week

[Guest guest]

PERMISSION TO FORWARD, REPOST & USE IN NEWSLETTERS.

Please urge your list owner to post everything even - perhaps especially

- things they personally do not agree with for fair balance.

If any of my postings is being censored, or selectively edited out, by a

listowner, you may wish to join my M.E. Chums list to get the whole unbiased

picture.

------------------------------

I leave the last word to Professor Albert Cilia-i in this string of

correspondence

following the two excellent companion articles by Carla Gatt in the Times of

Malta for

ME Awareness Week 2008 here ...

http://www.mefreeforall.org/2008-Apr-Jun.448.0.html#c3639

in response to my last letter (below).

You should have enough to make your own minds up now.

It's been a good illustration of some of the crucial issues that face us in

trying to raise

awareness amongst the public in newspapers intended for general readership.

Cheers

drjohngreensmith@...

Re: " The Problem with ME " & " A helping hand for sufferers " , The Times of

Malta, 10 May 2008

#8<http://www.timesofmalta.com/lifestyle/view/20080510/feature/the-problem-with-\

me>

Professor Albert Cilia-i's latest contribution (*Understanding and

treatment of ME sufferers, Letter submitted The Times of Malta, 10 June 2008

* <http://www.mefreeforall.org/2008-Apr-Jun.448.0.html#c3638>) to the series

of letters following the two companion articles in The Times of Malta for

M.E. Awareness Week 2008 (* " The Problem with ME " & " A helping hand for

sufferers " , The Times of Malta, 10 May 2008*) illustrates the importance of:

(1) acknowledging what is undeniably factually correct and heeding what has

already been agreed; (2) not making any unwarranted assumptions or erroneous

deductions and (3) discussing each issue in the same terms and not

introducing new elements, or changing the agenda, lest the whole thing

descends into a bar room brawl as, regrettably, it has done elsewhere in the

World.

To reprise what is factually correct: It was Albert, himself, who introduced

Professor Basant Puri's work recommending VegEPA for M.E. (*Myalgic

Encephalomyelitis*) sufferers. I know that Sultana, of ME Sufferers

Malta, thoroughly researched all that is known about this work with the M.E.

community, worldwide, before composing her reply. There were several

contributors to the original articles by Carla Gatt, not only . She

did not withhold any information, as may have been implied; she would have

preferred it to be included.

Your readers may wonder why Albert selects only this treatment for

attention. If VegEPA had been included, he could have complained that other

treatments had been omitted, for example, The Lightning Process, Mickel

Therapy, Reverse Therapy and Emotional Freedom Tecniques. And, if any, or

all, of these had been mentioned, we would have been equally analytically

critical: that no one, not even their inventors can fully explain how they

work; there is no scientific basis for any of them; they have not been

independently tested or approved by any medical authority; they have only

personal testimony from those who claim success, not balanced by any

dissatisfied customers for whom it did not work, who may be too ill to speak

out, or fear consequences if they do; that they rely on faith and place the

onus squarely on the patient because, if the patient says they feel better,

success is claimed for the treatment but if they do not, the patient is

blamed for being negative or, somehow, not being ready for it and that they

are all practised by a disparate group of people with no recognised training

and questionable qualifications such as " Life Coach " . Please note that this

is not to cast any slur on Professor Puri, who has an exemplary,

unblemished, academic reputation but nor does his authority render his work

immune from the same rigorous scientific scrutiny as anyone else, as I'm

sure he would agree.

Albert says that, if he had the illness, he might want to try vegEPA, or

consult a faith healer. Veteran M.E. sufferers believe he may have a very

different view if he had actually had M.E. for decades and had tried

everything available, with the huge disappointment after each one had failed

them. We know that no one claims a cure for M.E. but one always goes for a

treatment with the hope of one, or at least expectations of some degree of

recovery, which is always dashed.

Albert's final sentence, * " Until we know more, I see nothing wrong in giving

ME sufferers the benefit of the doubt and include 3 to 6 month treatment

with VegEPA as a therapeutic trial. I would consider it wrong to withhold

this on the pretext that it hasn't been " 100% scientifically proven " *, does

not acknowledge that we have all agreed already that VegEPA is worth a try,

despite not being 100% scientifically proven but there is an important

consideration of risk here, too, of undesirable side effects from untested

treatments, about which we may be more cautious than Albert. Even the

orthodox treatment of Graded Exercise Treatment (GET) has been shown to

leave more people worse after it, some irrecoverably so, yet it is one of

the recommended treatments for M.E. Again, Albert may have a very different

view if he had been put through the mill and ended up in a wheelchair, or

bed bound, as some have become.

Even when we have dealt with all the issues on the table, Albert introduces

some new ones, like faith healing or the placebo effect, for example, which

I would be quite happy to discuss but, again, he has switched the agenda,

which distracts from content of the original articles and, if I responded to

these new elements, would he come up with some more?

Interventions like Albert's give us an unwanted dilemma. If we do not

respond, it may appear that we believe he is correct, that we agree with

what he says, or do not have an answer. If we do reply and it leads to a

string of letters, it may be seen as a punch-up and we lose the interest and

respect of the general public. I don't want a slanging match with Albert -

or anyone else - but I have to say, in this case, he has been unfair to

and, by all conventions, unscientific. I am not speaking

provocatively, just plainly.

Good science is impersonal. Theories must be able to withstand scientific

scrutiny, whoever espouses them. I am not attacking Albert or sticking up

for . No one should take it personally and I beg your readers to

focus on the issues of the M.E. debate and avoid any personalities.

Yours sincerely

*Dr H Greensmith*