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Doctor Speedy and ME in search of medical honesty
Doctor Speedy and ME in search of medical honesty
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Constant agony of an ME sufferer
Thursday, 18 February 2010
http://www.belfasttelegraph.co.uk/opinion/letters/constant-agony-of-an-me-sufferer-14686747.html
Thank you for the article highlighting ME (February 9). I am now in my fourth year of suffering from the illness.
Like Lynn Gilderdale, my ME was brought on by glandular fever and severe tonsillitis as a child.
I am in constant pain and suffer from flu-like symptoms, severe fatigue and nausea.
My husband also has MS and before I became ill I was his carer. Now we try to help each other as best we can.
My husband gets much more help with his MS and people don't doubt his disability although most people treat me with scepticism.
I have had to fight for financial support since I became ill and recently the DLA refused to renew my care allowance although my symptoms have not improved and I feel I have actually deteriorated. Since my ME diagnosis I have also been diagnosed with fibromyalgia, depression, allergies and IBS.
I have written to Michael McGimpsey, the Health Minister, to ask that more help be given to ME sufferers in Northern Ireland and wait hopefully for him to act.
I am only 36-years-old and I feel my life is over.
GILLIAN WRIGHT
Bangor
Permission to Repost
ReplyDeleteThe Ramsay Research Fund
Following Professor Hooper's comments about money being wasted on poor
non-replication research (see below) my mind was cast back to not long after
8th October 2009.
Dr Charles Shepherd was ultra keen to hear from people approaching the ME
Association for funds towards prospective XMRV research.
Dr Shepherd cited back then at least four interested groups who were wanting
monies for XMRV research.
We should be asking the ME Association if they are giving their valuable
research cash to ANY groups presently carrying out what is becoming known as
"Quick and Dirty" non-replication research - research that has already
demonstrated nothing more than 0% positive findings.
As we have already discussed here on MEActionUK, replication research
requires that all patients tested should transparently meet both the Fukuda
and the Canadian diagnostic criteria to ensure that the patient cohort is
not diluted in any way by those who may be suffering from "Fatigue
Syndromes" unrelated to Myalgic Encephalomyelitis or indeed ICD-10 G93 CFS.
As Mithriel said earlier.
The WPI had a fairly robust test worked out before they started testing
people with CFS.
This MRC group should have used a positive blood sample to test their
methods until they were working well. Only then could they say anything
meaningful about CFS patients.
Before a test is optimised, patient samples should be the best quality
available if there is going to be any chance of detecting virus and they
should be from those patients who are most likely to have the infection - in
fact the group the WPI tested.
Just fulfilling the Fukuda definition is not enough.
Anyone who has been around ME patients should be able to pick out a
consistent set of symptoms.
Once a test has been validated and shown to detect virus in ME/CFS THEN it
would be reasonable to take random samples from the clinics to see if those
patients had ME/CFS or something else. To use them to test the theory is
back to front.
Mithriel
We need to know what the Ramsey Research Fund is now being used for.
Is ME Association Funding being used for the current crop of "Quick and
Dirty" research that fails to replicate Lombardi et al. yet tries to make
out that it is better than Lombardi et al.?
Or is Ramsay Research Fund money being used properly i.e. for genuine
replication research that compares known positive samples from Lombardi et
al with proposed tests over here in the UK until such tests in this country
become competent enough to actually find XMRV positive patients over here?
We already know that there are XMRV positive CFS and ME patients over here
in the UK - more and more people tested privately are finding themselves
XMRV positive. To say that such people do not exist only confirms the
failure of the present UK research thus far.
If Melvin Ramsay knew that his fund was quite possibly being used for the
purposes of scoring political points due to monies in the fund that carries
his name being used for "quick and dirty" sub-standard non-replication
research then my view is that he would be greatly saddened......
cont....
ReplyDeletePoor science does none of us any good except for those trying desperately to
score expensive and deceptive political points by claiming headlines that
imply doubtful or no link at all between XMRV, Myalgic Encephalomyelitis and
ICD-10 G93.3 CFS.
If something is worth doing it is worth doing to the highest standards
possible.
As Professor Hooper stated earlier today.
I would expect such good experimental scientists to honour the
Lombardi/Mikovits study by the most careful, replication of patient
characterisation/classification and methodological exactitude.
This does not appear to have been the case - what a waste of money and what
a waste of an opportunity to substantiate the work of Lombardi et al.
No wonder such elementary failures regarding patients and method lead many
to the conclusion that deception and skulduggery is afoot.
Malcolm.
We all sincerely hope that the Ramsay Research Fund is being used for the
highest quality research that will do its utmost to genuinely replicate
Lombardi et al.
With two 100% XMRV negative studies based on non-replication methods and
patient selection it would seem a waste of money to simply repeat the series
of mistakes that have already been observed by us all.
Yours sincerely,
Stephen Ralph DCR(D) Retired.
http://www.meactionuk.org.uk
Are we now officially classified as potatoes, Dr Speedy?
ReplyDeletehttp://www.cfp.ca/cgi/content/full/56/2/e57
"Donald C. Cole, MD MSc FRCPC
Associate Professor in the Dalla Lana School of Public Health at the University of Toronto in Ontario, Head of the Agriculture and Health Division of the International Potato Center"