My letter to IOM panel on ME/CFS

Today the IOM panel for the redefinition of ME/CFS (USA) meet for the first time.  They will be hearing testimony from patient advocates (a whole 45 minutes worth) but have also accepted written opinion.  The letter copied below is my contribution:

To the IOM Panel for ME and CFS,

I am an ME sufferer in Northern Ireland, and I am very concerned about the IOM contract to redefine this illness. I think that what happens in USA can have consequences further afield, and therefore it is important that mistakes are not made.

We have been asked to answer the question: 
“What is the most important aspect or information that this committee should consider throughout the course of the study?”

In my view the most important thing to consider is that the experts who have written and endorsed the Canadian Consensus Criteria should NOT be ignored. Therefore the committee should consider disbanding and deferring to the experts as their number one priority.

Additionally, the term CFS should be abandoned. It has become too much of a waste-basket diagnosis and collects too wide a base of patients with poorly defined fatigues. All these patients deserve better. Patients who have ME also deserve a real diagnosis, rather than to be given a name that means so little - and which appears to intentionally belittle the whole disease process and especially the severe post exertional effects of ME.

I am also very concerned about the fact that much of this contract seems to be happening in a rushed manner, in secrecy, and without valid objections to the process being addressed. Put bluntly, there is little faith that the panel of mostly non-experts could ever improve on the definition agreed upon by the experts. 

So my message, like that of this petition:
https://secure.avaaz.org/en/petition/Stop_the_HHSIOM_contract_and_accept_the_CCC_definition_of_ME/?pv=4
is to stop the IOM contract and accept CCC as a matter of urgency.

Yours faithfully,

/s/

Sally Burch

Exercise Intolerance in ME: Newry, Belfast and Bristol Presentations

Dr Mark VanNess is talking at 3 UK ME events in early February 2014.  The editorial below was written by me (with help from Joan McParland) to help advertise the two events in N.Ireland.  I have also included the flyers for the 3 events.  I understand there are still a few places available for each event:

It is often said that everyone can benefit from exercise. Yet patients suffering from the disabling condition myalgic encephalomyelitis (ME) often report that exertion makes them much worse.

Now, in an exciting development, Dr Mark VanNess (Associate Professor of University of the Pacific, and Workwell Foundation, USA) can reveal what happens when ME patients exercise. Results from his two day cardiopulmonary exercise tests (CPET) show that ME patients are significantly more impaired than individuals who are simply unfit.  ME patients show a delayed reaction to even mild exertion known as Post Exertional Malaise (PEM). This has serious implications for the idea that Graded Exercise Therapy (GET) can be a useful treatment for ME.

Previous misunderstandings of ME as a psychosomatic type of illness (it is often called Chronic Fatigue Syndrome) have led to the impression that patients are either lazy, depressed, or simply exaggerating their difficulties. To further compound this dilemma doctors have no diagnostic biomarkers, little training in ME, and treatment options that only address symptoms.  This means that patients are often left in limbo. Some find themselves too ill to work and yet denied benefits because of difficulties proving their illness is a real physical disease. Fibromyalgia patients experience similar problems, both in terms of exertion intolerance and illness credibility.

The lack of specialist NHS services means that support groups like the Newry and Mourne ME and Fibromyalgia Support Group are inundated with requests for help. Good research into the physiology of ME, such as the excellent work by Dr VanNess, is hampered in the UK by a lack of funding. The patient population has responded by raising substantial funds for charities such as Invest in ME and ME Research UK who are now initiating their own research programmes.

In N.Ireland alone, there are an estimated 7000 ME sufferers, with 25% of those so severely affected that they can be confined to bed for years at a time.  The most ill are tube-fed and are unable to tolerate sound or light. Clearly much work still needs to be done.

Dr Mark VanNess will be explaining The Workwell Foundation research at two conferences:

- Stormont: Tuesday 4th February 12 - 2pm. Reserved for medical professionals and decision makers (2 CPD pts). Recent research and its medical implications. Thanks go to Dominic Bradey MP for hosting this event.  Bookings to: newryandmourne.me.fms@live.co.uk or 02890812368.

- Mourne Country Hotel, Newry: Sunday 2nd February 7 - 9pm. Aimed at patients. Research implications for the management of exercise intolerance. Cover charge £5. Bookings to:  02877769723 (1-5pm)  or  07843835713 (6-9pm)

PS  I have recently been appointed Vice Secretary of the Newry and Mourne ME and Fibromyalgia Support Group.  Writing this editorial was my first contribution in this position.  I look forward to working with the rest of the committee to further the cause of ME and Fibromyalgia within N.Ireland in the future.

The Newry and Mourne group have a new website here:  http://www.newryandmournemefms.btck.co.uk/