BE VERY CAREFUL WHAT YOU ASK FOR

I try not to let the shambolic mess that passes for “ME” advocacy these days get to me too much; through each, long heart-breaking moment of her agony and paralysis, my focus has to firmly be with Linda.

Our days are brutal; here on the extreme edge, what you search for, passionately, is truth.

Anything else just gets in the way, is potentially fatal.

So, it is gutting knowing that 10 000 people have signed an MEA petition for “CFS/ME”, never did I think I would see the day the so-called ME community would cave in and use that most damaging, most insidiously evil, most wicked of labels.

We haven’t had much to hold onto down the years , but at least we used to insist upon the correct use of Myalgic Encephalomyelitis, by God, with no mention of “CFS”.

“ME/CFS” was bad enough, but it was physically repulsive to use the language of psychiatry that has caused so many deaths. For as people with ME should know by now, CFS/ME is not a single disease, it is a Chronic fatigue- focussed, psychiatric made-up, conglomerate term, that mixes people with all sorts of different illness, including mental health conditions, together, thus serving no one and leading to confusion.

Ah, but then it was the MEA who gave us “Opathy” after all! While the rest of us were busy arguing for the separation of ME from CFS.

Did I say our situation is dire? What I am particularly shocked and rage at is that 10 000 people have signed a petition questioning why NICE’s policy on Severe ME has not been implemented fully ?!!! Really? An “individually tailored graded activity programme” which may draw upon “elements of CBT and GET”. This is the very last thing people with Severe Myalgic Encephalomyelitis need.

It is great, of course it is, to say that CG53 is not fit for purpose and to get such a wonderful response. However everyone who signed that petition gives the message that they agree with every single point in the Petition.

Do they really?

Where is their discernment?

The Petition raises questions, to us at least.

Do people with ME really want CFS/ME to be called a neurological disease, which will lead to even more confusion, validating all sorts of people with different diseases?

Where is the clarity on what is a neurological disease and what needs separating and letting go of?

The CFS/ME guidelines are not about Myalgic Encephalomyelitis. They are not even about CFS, rather they are about Chronic Fatigue , which needs its own set of appropriate medical guidance.

CG53 need a complete rewrite, starting with a firm biomedical focus on Enterovirus.

Looking at the detail of the Petition, it starts well.

Of course the guidelines are and always were, not fit for purpose.

Of course the Active list is essential.

Of course international research is important, however, the chronic lack of clarity of definition used by different research projects, leaves no one knowing who or what is actually being researched; the relevance of findings, for ME or CFS for that matter remains confusing and unclear.

Asking for International Research to be considered without specifying the term ‘Biomedical’, still leaves the door wide open for psychiatric research.

It worries us that the MEA does not ask for the withdrawal of CBT, only GET. CBT, when used to change wrong illness belief within a psycho-social interpretation of CBT, is just as insidious as GET, for mental exertion is equally as damaging as physical exertion to the genuine ME sufferer.

Of huge concern, to us, is the demand for Pacing for everyone.

Do you REALLY want Pacing for everyone ?

Although many people do pace, do not forget that not every one can.

To insist on Pacing across the board is to harm those barely hanging onto life, the most Severely Affected, for whom pacing is difficult to impossible.

To ask for Pacing across the board is akin to proposing Graded Activity for those Severely affected with ME.

The concept of pacing is a nonsense, when paralysed repeatedly all day and night long.

And here's the thing : asking for pacing for everyone is just another management strategy; it is nothing new!

Do you really still want “Management” ?

People with ME are desperate for medical respect, a removal of psychiatry from first hand input into ME, proper investigation, the tests afforded to other diseases, and a biomedical pathway, none of this is even mentioned specifically in the petition.

We want medical Treatment !!!

Linda, for the record, cannot pace, for there is no base line identifiable, when paralysing repeatedly, not even rest is possible for her, without paralysis; get real about what you are signing up for !

People with Severe ME, living, literally below Maslow, cannot even get on the bottom rung of life, never mind pace.

Pacing does not come to mind, way down here in the tortuous depths of this awful disease, any more than Graded Activity does!

What this petition shows, above all to us, is what a dangerous presumption it is, making demands on behalf of the most Severely Affected. Be careful what you presume to ask for; it can do untold harm unintentionally or be open to misinterpretation or misuse in the future.

Do 10,000 people really want to complain that people with Severe ME have not had the current ‘unfit for purpose’ guidelines, full implemented, with graded activity management is the core recommendation?

When signing petitions, please think about every single word and what it is actually saying; read the detail and think about the effect on everyone, not just you. Ask for it to be rewritten, if you do not fully agree.

We have spoken up for years for ME. The MEA Petition in our opinion is not safely worded enough to protect those with Severe ME.

This Petition , with its failure to demand the removal of CBT , with its recommendation for across the board pacing, with its promotion of Management Strategies, with its uncritical emphasis upon research that may or may not be ME research at all, goes a long way, in our opinion, to ensuring the future of the Fatigue Clinics.

Without a demand for better Clinical Criteria, such as the ICC Criteria which call to separate CFS and ME, without insisting that the Oxford criteria be banned, without specifying biomedical input and above all with a lack of knowledge of Severe ME, this Petition lacks the clarity required for a safe service.

The NICE Guidelines are absolutely not fit for purpose, but, we have to ask, are all the demands of the MEA petition equally fit for purpose? We do not think so, sadly.

That is why we could not and did not sign it.

Greg & Linda Crowhurst