Friday, 30 April 2010

Plus ca change...

There's just no dealing with ignorant people is there? Quoting below a charming comment posted in response to an article reporting the outcome of Dr Myhill's IOP hearing yesterday. I remain stunned by the hatred people like this can feel for sick people.

If this was a game of 'ignorant bastard bingo', this guy's scorecard would be full. I don't think they miss a single misconception, untruth or prejudice.

"CFS and ME are designer diseases that only affect the cosseted, educated worried well of the Western World. These 'diseases' are completely unknown in the Third World, even when malnourishment, parasites and social deprivation abound. If you remove these factors in the Third World, the recipients blossom like flowers in the desert. It makes me mad that so much resource is poured out on these deluded people, who virtually ALL need prolonged psychiatric help or cognitive behavioural therapy, not vitamins and yet more expensive tests. The arrogance of denial and insistence on their 'rights' gets up my - and I suspect most - people's noses.

The one thing in common with most CFS and ME sufferers is the enormous energy they have to spend time talking about their disease, researching everything there has ever been published about it and how they 'feel'.

Thursday, 29 April 2010

Today is Dr Myhill's hearing

Dr Myhill's presentation to the GMC will be available on line at 9.30am Thursday April 29th.

Please follow events if you have the time. Dr Myhill is recognised as one of the UK experts on ME. It seems a remarkable coincidence, then, that the GMC (yes, the same GMC that has had its own files on ME locked up under FOA exemptions until 2071) is so eager to shut her up that they have acted in this case on an initially-anonymous enquiry about making a complaint to drag her to a seventh hearing (the complainant has since identified themselves on the Bad Science website, essentially saying 'what a laugh, the GMC grabbed the chance offered them when I sent a badly-typed and speculative email asking if it were worth complaining again after all previous complaints had been dismissed, and are forcing her to a hearing').

The GMC have refused to seek a declaration of interest from the complainant.

The GMC initially gave Dr Myhill one day to respond to allegations. As she says, has she simply been out of her office that day, she would be Mrs Myhill now. If you want something to compare that to, I believe Harold Shipman was offered four week to prepare his defence.

The GMC have refused a request to have the proceedings recorded by video camera. Said request was made (a) because so many wished to attend the hearing, but the GMC refused to provide extra space and (b) the GMC has an unfortunate habit of losing documents in Dr Myhill's case.

UPDATE: here is Dr Myhill's defence as presented by her this morning. I'm making no apology for posting it in full

Dr Myhill defends her case at the General Medical Council Interim Orders Panel hearing

My Background

I come from a large family of doctors and indeed my grandmother was one of the first lady doctors. I was brought up with an analytical approach to medicine, which emphasised diagnosing the causes of disease rather than merely the prescription of drugs to treat the associated symptoms. This sparked my interest in a branch of medicine which looks for the root causes of disease and uses diet and nutritional supplements to treat those root causes. We call this Ecological Medicine and in 1979 the British Society for Ecological Medicine (BSEM) was founded. It is made up of practising GPs and consultants with similar aims. Shortly after I qualified as a doctor in 1981, I joined this Society.

Between 1992 and 2009 I was the Honorary Meetings Secretary of the BSEM and for the latter ten years of my tenure I was also the Honorary Secretary . During that time I organised biannual scientific conferences, a five day international conference at Oxford together with training days for other doctors – up to six days a year. I continue to lecture regularly at those sessions and indeed more widely.

This ecological approach has proven particularly helpful in the management and treatment of myalgic encephalomyelitis (ME), otherwise known as chronic fatigue syndrome (CFS).

The BSEM has its own Special Interest Register and I was one of the first doctors to qualify for this in 2004, a process which required both my presenting long and short case histories and also my being subject to audit. My association with the Society is detailed in President Dr Damien Downing’s letter of 23.4.10, a copy of which has been passed to the Panel. I am lead author of a January 2009 paper published in the International Journal of Clinical and Experimental Medicine 2009 2 (1-16) entitled “Chronic fatigue syndrome and mitochondrial dysfunction”. Joint authors included Dr Norman Booth PhD of Oxford University and Dr John McLaren Howard DSc FACN. That paper was well received world wide and Dr Booth flew to the United States of America to present it at the International CFS/ME conference March 12-15 in Reno, Nevada in 2009. The Panel has a copy of this paper together with a letter to the GMC from Dr Norman Booth.

In that letter he states:

Dr Myhill is a guiding light in the field of CFS/ME. There is no other doctor, on indeed consultant, in the UK who has the up-to-date depth of knowledge of the scientific literature, the understanding of the nature of this illness, and the experience and expertise of working with patients to improve their condition.”

Much of the previous six GMC hearings I have faced were concerned with my prescribing of thyroid hormones. In order to clarify the issue I prepared a position statement with respect to the safe and effective prescribing of thyroid hormones. You have a copy of this position statement and also a covering letter signed by myself and another 12 doctors. As you can see it is extensively referenced and we hope that this will provide a stimulus for wider debate of this important issue within the scientific community. I move from NHS to private work and GMC investigations begin I have been seeing and treating patients with CFS/ME since 1982 when I first started work in NHS general practice. During this time I increasingly found that I did not have the clinical freedoms I needed to treat my patients effectively. For example to properly assess thyroid function one needs to measure a TSH, a free T4 and a free T3. The NHS laboratories would often refuse to do more than a TSH. A red cell magnesium is a very useful test – but the laboratories would only do a serum magnesium which is not helpful except in acute emergency situations. So, after 20 years of NHS practice, I finally moved to full time private practice in 2000.

During the last ten years, my Private Practice has built up and soon I was unable to accommodate all the patients wishing to see me. So I decided to set up a website where I could post all the advice and management techniques I had learned over the years. That website was subject to GMC scrutiny between 2005 and 2007 and was not found wanting at that time. Indeed I have been under almost constant GMC investigation during my time in Private Practice and have faced six Fitness to Practice hearings, all of which were cancelled with no case to answer. No complaints came from patients. No patient was harmed or put at risk. No allegations were upheld. No conditions have ever been placed on my practice.

An independent account of the investigations conducted by the GMC into my practice between 2001 and 2007 has been documented by Mr John Macdonald QC and you have a copy of his Opinion. I would like to repeat the Opinion of the GMC’s own QC Mr Tom Kark who, with respect to my case, advised the GMC on 04.10.07 as follows:

Dr Myhill’s good intentions are not seriously in doubt and it is known that she has very substantial patient support”

John Macdonald went on to opine

Anyone who has had any dealings with Dr Myhill is not likely to doubt her good intentions. I find it very surprising that these four charges were persisted with for so long. If Dr Myhill had been interviewed at an early stage by a senior member of the GMC’s investigating team and proper records had been kept, the overwhelming probability is that all four of these complaints would have been dismissed in short order. This, in my opinion, is what should have happened”.

On the basis of this advice to the GMC by its own counsel and also Mr John Macdonald’s Opinion I requested a private meeting with Jackie Smith, Head of GMC Fitness to Practice Investigations, and this meeting finally took place on August 12th 2009. I wished to request that the two QCs’ Opinion be observed by the GMC and that I be left to practise medicine in peace. Jackie Smith refused to allow Mr Macdonald QC to attend that meeting and so I attended alone. At the meeting she refused to address any of the concerns in Mr Macdonald’s Opinion . She also refused to sign the minutes of that meeting, a copy of which has been passed to the Panel. Indeed she has refused all further communication with me either by email or letter despite being prompting.

I apologise for speaking at length about my history of GMC investigations but I draw the Panel’s attention to GMC Guidance Imposing Interim Orders April 2008 Section 24 concerning interim conditions of interim suspension

The following factors may also be relevant 

a) Whether the practitioner has complied with any undertaking given to the GMC or conditions previously imposed under GMC Fitness to Practice procedures b) The practitioner’s history with the GMC (if any)

I reiterate that there have never been any conditions imposed on my practice by the GMC.

As stated above, as I have learned new information which I believe, through direct clinical experience, to be helpful to patients in general and ME/CFS sufferers in particular I have posted it on my website. I do this because there is much that can be done to improve the health of these sick people using simple dietary, nutritional and lifestyle interventions without ‘high tech’ medical interventions. Indeed I have received much positive feedback from people whose health has been improved as a result of the information contained on my website, information which is of course available without charge. This includes the ability to download my book on the management of CFS /ME from the website,again free of charge.

There is a standing invitation on the website for professionals and patients to send me ideas and indeed this has greatly improved the website content. I am always happy to change the content of the website given good reason.

The new Wikipedia look alike website

Many patients found my old website not to be user friendly and one of these patients, Mr Terry Ellison, built me a new site using a Wikipedia template. Mr Ellison did this without charge as a way of thanking me for the help I had been able to give him regarding his own Chronic Fatigue Syndrome diagnosis. This new website has greatly improved access to information and has generally been well received. Moving many hundreds of files from one site to another has been an arduous business, largely done by volunteers, and inevitably there have been mistakes and typographical errors. I have received very constructive comments from doctors, health professionals and patients from all over the world and this has helped me to correct these errors. Areas where I have been unclear as well as suggestions for further pages have been made and I am deeply grateful to all those people for their constructive input, which has undoubtedly enabled me to improve the quality of information on the site.

This is why it was particularly distressing to receive news of an anonymous complaint about my website made to the offices of the General Medical Council. I received the details of this complaint on March 31st 2010 and the GMC granted me 4 weeks to comment. As such, I started to prepare my response. However, four working days later, my office received a further communication from the GMC on Thursday April 8th to inform me that an Interim Orders Panel was to convene on Monday April 12th. I had one working day in which to respond. Had I been away from the office that day I should have returned to a fait accompli.

The GMC has concerns over two complaints – one complaint was detailed in a letter to the GMC dated June 18th 2009. The second came to the GMC in an email dated February 9th 2010. The GMC had allowed themselves 10 months to consider the first complaint and 8 weeks to consider the second complaint but I was permitted just one working day to respond to the GMC’s call for an Interim Orders Panel (IOP) and respond to both complaints.

The GMC’s own rules are that a doctor should receive seven days’ notice for an IOP (ref – Imposing Interim Orders April 2008 with August 2009 revision paragraph 11). So I appealed at once to the GMC and was relieved that I was granted a further 13 working days to prepare my defence.

The Complainant must be credible

I do understand that this is not a Fitness to Practise Hearing and therefore that there should be no examination of the content of either complaint. However I do have concerns about the credibility of both complainants and this is the issue I would like to address now.

I note that under GMC Imposing Interim Orders: Guidance for the Interim Orders Panel and the Fitness to Practise Panel April 2008 Annex 9 states:

The Interim Orders Panel will make no finding of fact but the complaint must be credible and backed up where possible by corroborative evidence.”

The First Complaint

There are discrepancies contained within the first complaint which should have been apparent to the GMC last August. The complainant’s letter to the GMC was dated June 18th 2009 concerning a patient. The GMC was sent the patient’s entire NHS medical records on August 29th 2009. It should have been clear then to the GMC that there were serious discrepancies between the allegations in the complainant’s letter and the contemporary medical records.

Furthermore I pointed out some of those discrepancies to the GMC in my letter, copied to the complainant, dated December 18th 2009. You have a copy of that letter in your bundle of documents.

In his letter of complaint to the GMC dated June18th 2009 Dr Y stated

On 24th March I had a further telephone conversation with X. I reiterated that we had not agreed to administer or train X to administer the injections”

But this is at odds with the patient’s medical records in which there is a letter from Dr Z to the district nurse which reads

Dear Colleague Please can X be taught how to administer the B12 injections. Yours sincerely Dr Z

The GMC acknowledged receipt of my letter on January 18th 2010 pointing out this discrepancy and confirmed that the complainant had also been sent a copy. The complainant was asked to respond to the GMC within two weeks. I do not know if the complainant complied with this request made by the GMC but he did not afford me the courtesy of even an acknowledgement nor was I copied in on any subsequent correspondence regarding this matter between the GMC and the complainant.

The GMC sent me that patient’s full NHS medical records on April 8th 2010 and within a few minutes of perusal it was clear that there were further discrepancies. I wrote as a matter of urgency both to the GMC and also to the complainant but both have refused to take any further actions to clarify these discrepancies.

The complainant has had more than enough time and warning to put the record straight. I have asked the complainant directly to attend this IOP to put the record straight but have received no response. I have also asked the GMC to subpoena the complainant for this express purpose but I am not aware whether the GMC has taken any such action.

I do not know if the complainant is present here today or not.

I also have concerns about the manner in which this first complaint was investigated. In the course of investigating this complaint, the GMC took the confidential NHS medical records of the patient involved. This they did without knowledge of the patient, without consent of the patient and without anonymising the medical notes. These medical notes have been sent on to me from the GMC, again without patient permission or knowledge. Since the GMC requires nine copies of all material pertinent to their investigation I assume they have nine copies of this patient’s private and confidential medical records.

The is in direct contravention of the GMC’s own policy in taking patient medical records as stated to me in a letter from GMC officer Patricia Collins 12th June 2007.

Over the nine years that I have been subject to GMC investigation my patients’ NHS notes have been taken by the GMC without knowledge, permission or anonymising the notes. I am not informed by the GMC when this has been done.

The Expert Witness Report

On Monday April 26th this week I received an Expert Witness Report. This Report has required my response because it forms part of the GMC submission placed before the Panel at my IOP hearing today Thursday April 29th.

On June 18th 2009 the GMC received the above complaint concerning my recommending B12 injections to a patient. The letter of instruction to the expert witness Professor Bouloux is dated 18 March 2010. His report is dated 22 April 2010.

It has taken the GMC over 10 months to obtain this expert witness report. By contrast I was initially given 2 days in which to respond. Once again, I am astounded by the lack of fairness and Natural Justice displayed by the GMC, particularly with respect to the time given by itself to prepare the case and the haste with which I have been forced to prepare my defence.

I apologise for the detailed analysis of Professor Bouloux’s report which follows, but I consider this document, to be so seriously flawed that the IOP needs to be aware of my most pressing concerns about it.

Professor Bouloux is an endocrinologist. By his own admission he is not an expert in mitochondrial disorders. In compiling his Report he has deemed it adequate to conduct only an on-line perusal of Pub Med for his information on mitochondrial disorders. He is not an expert on chronic fatigue syndrome. He has, by his own admission drawn upon the published NICE guidelines regarding the management of CFS. Using these sources of information Professor Bouloux concludes that

Dr Myhill has seriously violated the principles of good clinical practice by not adhering to duties of care and due diligence expected of a practitioner”

Available documents

Professor Bouloux does not list my paper, published in the International Journal of Clinical and Experimental Medicine (Ref:, as one of the six documents he studied in the preparation of his Report. This paper looks in depth at the biochemical lesions in mitochondria which underpin energy supply to the cell and relates this to patients with CFS. Essentially the worse the mitochondrial function the more fatigued the patient and vice versa. This is the first paper in the history of CFS which clearly shows that CFS has a measurable physical basis. The degree of correlation between mitochondrial function and levels of fatigue stands very well against rigorous statistical analysis and is significant to an extremely high degree of confidence level. My subsequent clinical experience suggests that nutritional and other interventions are highly effective in correcting this mitochondrial dysfunction. The Panel has before them the testament of many thousands of CFS sufferers and relatives and friends of CFS sufferers who vouch for this effectiveness. Whilst it could be argued that this represents only anecdotal evidence, there comes a point where the sheer volume of success stories from individuals represents substantive evidence as to the efficacy of a treatment protocol. I believe this point has been reached and, coupled with my published paper, contest that there is a firm evidence base for my interventions. However, despite apparently not looking at this paper, and presumably not having sight of the many thousands of afore mentioned testaments, Professor Bouloux goes on to comment about it and make derogatory comments that are simply not true. This paper was published in a highly reputable journal and was peer reviewed.

The report layout is unprofessional. Professor Bouloux’s report was sent to me pinned together by a paper clip. It was not sent on headed paper. The paragraphs and pages are not numbered. The last page with Professor Bouloux’s signature was sent to the GMC by fax, the rest of the pages apparently not. The Report contains grammatical errors, such as the use of the verb ‘advise’ rather than the noun ‘advice’ where Professor Bouloux is discussing the background to the complaint. Whilst the strength, or otherwise, of Professor Bouloux’s Report should not be judged solely on its grammatical accuracy, the existence of such basic errors does indicate a lack of care in its preparation.

I am used to reading medical papers which, when fact are made, are referenced. Professor Bouloux states in his expert witness report that

Some 50% of [CFS] patients respond to the use of serotonin reuptake inhibitors”.

This assertion is not referenced and I believe has no evidence base. Indeed his report has other unsubstantiated assertions and statements based on pure supposition. A combined example of assertion and supposition comes where he states:

Many patients have turned their back on allopathic approaches, preferring instead to seek treatment in an unconventional setting, where they not infrequently get greater support and understanding, and in some cases hope”

Patient record

Professor Bouloux was given by the GMC a full copy of the patient’s NHS records. Clearly he has not read these carefully and as a result his report is based upon misinformation. The important point here is that he has accepted unquestioningly the GP’s version of events instead of checking the facts for himself. In this sense, his Report does not constitute new evidence but rather merely a reiteration of previously submitted evidence. I have already rebutted these points in detail and would refer the Panel to my letter of December 18th 2009. But additionally Professor Bouloux has a third version of events. As you have read, Dr Y says that the Practise never agreed to train X to administer the injections. The letter to the district nurse says it did. But Prof Bouloux states that

"patient X  requested that a District Nurse instruct X to perform B12 injections"  

I can only infer that he has another source of information that he has not referenced. Clearly the Panel will need to see that reference and in the interest of fairness I should also like to have sight of this new information.

In the event no injections were supplied to X nor were any administered.

I would also like the Panel to observe that there is no letter of patient consent within those notes permitting them to be released to the GMC and third parties. Professor Bouloux should have been aware of this.

In his report Professor Bouloux states that another member of the family has a chronic fatigue syndrome. In the context of this comment the identity of the person is obvious. In preparing this report therefore he has breached yet another patient’s right to confidentiality.

Professor Bouloux states that my advice does not represent evidence based medicine. What he has clearly failed to do is to read my paper(Ref: This is the evidence base for the treatment that I recommend. As I have already said, the testament of many thousands of CFS sufferers and their relatives and friends who have written to the GMC in my defence strengthens this evidence base.

In response to a question from the GMC vis

"Does the information provided by Dr Myhill to the GPs represent evidence based medicine?"

Professor Bouloux’s answer is a categorical

It does not, as there is no evidence base for the treatments recommended”

He goes on to say

“…..evidence base would require that a properly controlled double blind placebo controlled study be conducted to demonstrate the efficacy of the intervention” sic

These assertions by Professor Bouloux would be laughable if they were not so serious. Many highly effective medical interventions are practised in daily NHS work that are not proven by placebo controlled double blind trial. In his own area of expertise, namely endocrinology, on which I have written a position paper as listed above, I have seen no paper in which thyroid replacement therapy has been subject to placebo controlled double blind study. By Professor Bouloux’s standards, no one in the country should receive thyroid hormones and if such a bizarre policy were carried through, the Panel will be aware that many very sick patients would suffer and die as a consequence.

On receipt of this report, I had numerous immediate concerns and so I telephoned the GMC to ask if Professor Bouloux would be present at this hearing. Mr Bridge, the GMC Case Officer assigned with the task of dealing with the details of this Hearing, was not answering emails or the telephone. I spoke with GMC officers Alison Thompson and Scott Geddes neither of whom could answer my question. I was referred to Neil Marshall who was not answering his phone and, despite prompting from Scott Geddes has not contacted me.

So I remain unaware as to whether Professor Bouloux is here today to respond to my concerns.

The Second Complaint is Anonymous

My new Wikipedia lookalike website was launched in February 2010. The GMC received a complaint about that new website on February 9th just a few days later.

It is of great concern to me that this anonymous complainant chose not to contact me directly with any of his concerns. I would have been very happy to address those and, given good reason, changed the details in my website. Indeed this is the best way for science to progress! I am very mindful that I do not know all the answers and indeed the pleasure is in discovering new techniques to help patients!

I do understand and respect the complainant’s request for anonymity and have no desire to know his name or whereabouts. However I did wish to know whether he was acting out of personal concerns or if he was acting for a third party. I wanted to know this because in the past other practitioners of nutritional medicine have been harassed by investigative journalists.

With this in mind I asked the GMC to approach the complainant and request a Declaration of Interest statement. The GMC refused even to contact the complainant let alone request such a statement. This refusal was given for, as the GMC put it “ reasons of confidentiality”.

However the complainant has identified himself on line in a website which goes under the name of “Bad Science”.

I reproduce below, verbatim, online quotes from the 'anonymous' complainant.

This was posted on Thursday April 15th at 2.20am

OK, so I finally bit the bullet and complained (anonymously for reasons that will become clear) to the GMC about uber-quack, Dr Sarah Myhill and to my surprise they have decided to launch a Fitness to Practise investigation. Her response has been quite interesting so I thought I would share it with the Badscience community. It will be interesting to see how the GMC proceed as I believe she has been in the same situation on numerous occasions in the past with similar public campaigns resulting in the GMC dropping charges for undisclosed reasons.

She has a (public) Interim Order Panel (IOP) hearing on 29th April at which she could have her license to practise suspended for 18 months.

Those who live in glass houses should masturbate in the basement - Dara O'briain”

At a further post he states

"I actually find this quite funny as my initial contact with the GMC was just a speculative email to the general enquiries email asking whether it would actually be worth submitting another complaint given the failure of the previous 6 efforts. This was written with some haste during a coffee break and hence contained a few typo’s. Amusingly, after submitting my full complaint the GMC decided to use this email to front the complaint to Myhill *sigh*."

These posts are accompanied by a photograph which I presume to be of the complainant himself. It pictures him underwater drinking a can of coca-cola.

GMC Investigation of Anonymous Complainant’s concerns Because of the design of the website it is possible to track who is looking at the web pages and for how long. The GMC received the complaint about my website at 5.42am on February 9th 2010. Six days later on February 15th the GMC accessed the very web pages flagged up by the complainant between 13.16 and 13.28. That is to say the GMC spent 12 minutes looking at my website.

I do not know who looked at those web pages nor whether they had any medical qualifications nor if they had any knowledge of diet or nutrition. I have received no expert witness report on those web pages and so I am led to believe that the GMC upheld the need for an IOP Hearing regarding this anonymous complaint on the basis of a 12 minute perusal by, for all I know, an unqualified GMC officer.

Conclusion: The Possible Outcome of this Hearing The GMC state that it is their primary duty to protect the General Public and I entirely concur with this. The letter I received on April 8th from Assistant Registrar Rebecca Townsley of the GMC stated that I should be subject to this Hearing because the Case Examiner considered “there is a potential risk to public safety”.

I repeat I am very mindful that this is not a Fitness to Practice Hearing and therefore there should be no examination of the content of either complaint. However I do have concerns about the credibility of one complainant and the complete lack of any corroborative evidence in both cases.

The GMC has been sent OVER 800 letters from patients and doctors which the Panel has before them. These letters collectively present a picture of support for my website and treatment protocols whilst at the same time expressing incredulity at the manner in which the GMC has behaved. The Panel also has a copy of the on-line petition which on April 27th had 3,345 signatories but also many thoughtful and incisive comments. This overwhelming show of support has happened in a relatively short period of time and emanates from not only within the United Kingdom but also from all around the World. I have been humbled by the level of support which in some cases comes from very sick patients who I know will have expended considerable reserves of their limited energy to put their point across in this way.

I am fed up with the way that I have been endlessly investigated by the GMC over the last nine years with issues that I can only describe as trifling. It is about time the GMC recognised that I have become expert in the application of nutritional medicine to simple and complex disease modalities for which this approach has much to offer.

In this field of nutritional and environmental medicine I am seen as a pioneer. The methods used are logical, scientific and evidence based. An understanding of this approach empowers patients to help themselves and, as evidenced by the pile of testimonies laid before it, seeing great success.

I fail to see how this can be construed, as the GMC case officer puts it, as posing “a threat to public health”. Indeed should I not speak out and keep this hard earned knowledge under wraps for fear of GMC prosecution, then I would indeed be putting patients and the wider public at risk.

Whatever the outcome of this hearing I shall continue to put the patients’ Best Interest at the heart of my medical practice.

Sarah Myhill April 29th 2010.

A small and exciting day

Very low on spoons today, but just wanted to bounce (gently!) about yesterday. I did something damn near spontaneous! Anthony announced on Tuesday night that he had a meeting in Ely on Wednesday and without thinking I said 'Can I come too?' Ely is somewhere I used to visit often for lazy shopping, coffee and cake consumption, and sitting reading in the cathedral grounds.

So yesterday I managed an unplanned day out. I literally can't remember the last time that happened - going out for a day without pre-resting, planned post-resting time, etc.

OK, the day ended with me lying flat, my arms on pillows, making feeble 'ow' and 'feed me' noises at Anth. And today will be a write-off. But it felt so very good to have achieved something so normal.

And I impulse bought a haircut - no more 'heavy-hair headaches' for this girl :)

Wednesday, 21 April 2010

Everybody knows about ME

So much sadness and anger in this song. Oh, and truth, did I mention truth? Please watch it/listen to it when you get time.

The writer talks here about how and why she came to write the song. The video was made by people from the Phoenix Rising forums, after Laurel of Dreams at Stake shared the song with them.

I will definitely be wanting to listen to more of Cinder Bridge's music for its own sake, too!

Everybody Knows About Me.
By Susan Wenger of the indie/pop group Cinder Bridge

Here I am again, sitting by the window
In my small apartment on the 2nd floor .
Keep myself occupied, by looking at the traffic
As if I lost the right to ask for more.
My body feels like it’s moving under water
As I lift a cup of coffee to my face.
I think about the things I’d like to try and do today
But somewhere in the middle lose my place.

Thick fog, hazy brown, the two-ton weights that pull me down
They don’t exist if no-one else can see.
Everybody knows about the failings of the down and out
And everybody knows about me.

I had a good job, had some good friends,
Had a life I could look forward to when I woke up each day
And then the fog rolled in, consumed them one by one
’til there was nothing left for it to take away

Sometimes I count it as a victory when I manage
Just to drag my aching body out of bed
The doctor’s mystified, could not produce an answer,
So they told me it was all in my head.

’cause if I wanted to I could shake this yuppie flu
Straighten out and set myself free.
Anyone could clearly see, we all choose our own destiny
And everybody knows about me.

Does it make it easier for you
To think there must be something I could do?
Rise like a phoenix from the ashes of this solitary world.

So I remain here, sitting by the window,
Watching all the people with their lives to live.
I would give anything to go outside and join them
But today I don’t have anything to give.

And still they have no doubt,
I’m looking for an easy out
And this is what I wanted secretly.
Everyone will have their say,
They shake their heads, they walk away
And everybody knows about me.

Everybody knows about me.
Everybody knows about me.

Friday, 16 April 2010

Do Not Have

So I called in and my blood tests all came back as 'normal, no action needed'. At the same time, I've taken the last of my stupidly-big antibiotics.

Which is good. Except the symptoms are still around and so presumably something is responsible for them. Which means I am sitting here pondering whether to

1 - make another appointment and insist I still have the dizziness etc - at the risk of being labelled a hypochondriac/typical ME crazy lady who is hyper-aware of her own body

2 - see what happens next week in the absence of the drugs

3 - decide not to do anything unless the symptoms get quite a bit worse - you know, visibly worse - maybe they'll go away on their own

And it made me wonder - whatever happened to review appointments? I'm sure that in my dim and distant past, when a doctor gave me drugs or sent me for tests, they would say 'and I want to see you in two weeks/a month/whatever to check progress'. Progress seems no longer to be checked unless one insists on it (with the attendant risk of getting the 'stroppy patient label' that carries).

Does anyone else notice this change, or am I experiencing doctors who follow the Wesseley school advice of 'never schedule review appointments for an ME patient, it just encourages them'? Paranoid, moi?

Thursday, 8 April 2010

Do or Do Not, Want?

Undergoing a prime example of how having ME has messed up my reactions to things today.

My GP sent me for blood tests yesterday because he suspects diabetes.

Pre-ME, my feelings right now would have been a clearcut, no-question-about-it 'hope the results are negative'. The sane reaction. Because no one wants diabetes, right?

Instead I find myself see-sawing between hoping for a negative result and thinking 'but at least it might explain some of the might mean some of them could be would show people I'm not just a crazy lady who gets off on pretending to be sick...'

They fuck you up, your invisible illnesses.

Monday, 5 April 2010

You're not paranoid if they are out to GET you: Part 1

Invest in ME have updated their page on the Magical Medicine report and Malcolm Hooper's attempts to get anyone to actually engage in debate.

In an earlier entry, I reported back on the pathetic response he got from NICE, who saw fit to return the report unread with a refusal to discuss the matter at all. Now, I don't expect NICE to be fluffy bunnies - they are all about saving money and openly so. But they do call themselves the National Institute for Clinical Excellence. So when people point out that they are not abiding by their own guidelines, when people feel some of their guidelines are so far from correct that they take them to court, when someone sends them a report of over 400 pages detailing the misrepresentation of ME and the mass of evidence for it not being a somatoform condition...well, one does rather feel they might come up with a more dignified and intelligent response than sticking their fingers in their institutional ears and going 'la la la...can't hear you...'

Professor Hooper never gives up on us, though, and continues to try to get someone in any kind of position of power to listen to his painstakingly-researched concerns.

His most recent missive winged its way to the MRC on 30th March and I reprint it below. He has now lodged a formal complaint about the PACE trial with the relevant Minister (though one wonders if he might not have done better to just send it to the Shadow version at this stage!).

The MRC are, of course, the lovely people with the Super Secret Files (I kid you not, mostly because you couldn't make this stuff up) on ME. The file in question, is held in the National Archives at Kew (formerly called the Public Record Office - I preferred the old name, by the way, which implied the information was held there for us, the public! ) - its 'closed' period has been recently extended from ending in 2023 to ending in 2071. By which time, as Margaret Williams points out, most current ME sufferers and campaigners will be 'conveniently dead'.

You can read here an account of Nicola Reiss's experience when she tried to see these files or be given a sensible reason why she should not be allowed so to do...another account I have read tells of how the enquirer was put through to an employee at Kew whose dedicated task is to take calls enquiring about 'those documents' - who read them a script on protecting privacy of individuals and answered no direct questions.

Now, my last job before ME kicked me in the head was in a local archive office. So I get the closure of hospital records etc. But we are talking here about people who amongst other things gave evidence to an inquiry. An inquiry meant to deal with a public concern. Their privacy can be protected perfectly adequately by the astonishingly complex means of getting a marker pen and blacking the names out. Do correct me if I'm wrong? So you have to be a very laid-back kind of ME girl to not wonder at this point - what is it they don't want us to know? As an historian, as a human being with an alleged IQ somewhere above pond slime, seemingly gratuitous suppression of information makes me automatically suspicious. My gut tells me this is not quite on the level, somehow, some way. I promise myself an attempt to view these documents, so I can report back for myself on what happens...

But for now, here's Professor Hooper. Please wish him luck, everyone.

LETTER to Dr Morven Roberts, Clinical Trials Manager, UK MEDICAL RESEARCH COUNCIL

from Professor Malcolm Hooper

From Malcolm Hooper Ph.D.,B.Pharm.,C.Chem.,MRIC
Emeritus Professor of Medicinal Chemistry
School of Sciences

Fleming Building
Wharncliffe Street
University of Sunderland

30th March 2010

Chief Scientific Adviser to the Gulf Veterans' Association
President: the National Gulf War Veterans and Families Association, NGVFA, (2002)
Dear Dr Roberts,

re: MRC PACE Trial
You will doubtless be aware from Lord Drayson (the Minister with responsibility for the MRC) that on 11th February 2010 I lodged a formal complaint with him about the PACE Trial (reference 2010/0013270POLD).
There were three reasons for going directly to him instead of to you in the first instance, as would have been customary:
1. In response to a formal complaint made in November 2004 by an alpha-rated former MRC grant-holder, and despite the involvement of the then Science Minister, Lord Sainsbury of Turville (reference SAMP001/040728) and Dr Rudi Vis MP, the MRC External Communications Manager, Elizabeth Mitchell, had already made plain that the MRC is not interested in considering complaints about the PACE Trial.
2. By lodging a complaint with the MRC Clinical Trials Manager, we are mindful of the fact that the person intimately involved with the PACE Trial, Professor Simon Wessely, is in charge of the PACE Clinical Trial Unit.
3. Given that the MRC is co-funding the PACE Trial, inviting the MRC to consider this substantial complaint would seem to be inviting the MRC to be both judge and jury in its own court – hardly consistent with the most elementary standards of independence and justice.
However, following the advice of Lord Drayson, a copy of "Magical Medicine: how to make a disease disappear" is enclosed, which sets out our concerns in detail.
Many members of the international research community are monitoring the PACE Trial particularly in the light of –
-The total failure to engage with the vast body of significant biomedical evidence about the nature of ME/CFS contained in more that 4,000 published, peer-reviewed research papers.
-The misleading and contradictory content of the Trial manuals demonstrating the apparent coercion, and exploitation of patients.
-The seriously flawed and inadequate science that under pins the Trial.
We have taken much time and great care in compiling the evidence presented in ‘Magical Medicine’ and I look forward to receiving your reasoned response to our legitimate concerns expressed therein.
I would, therefore, appreciate an informed and considered reply and not the standard and dismissive MRC proforma letter that has been sent to many people who have already written expressing their concerns about the inadequacy of the PACE Trial.
Yours sincerely

Malcolm Hooper

Enc. “Magical Medicine: how to make a disease disappear.”
Dr Morven Roberts
Clinical Trials Manager
20 Park Crescent