The need for more biomedical research into ME will be the subject of an Adjournment Debate on the House of Commons on Wednesday, 2 February. Ian Swales, the Liberal Democrat MP for Redcar, heard this afternoon that he had won the right to raise the subject in the weekly ballot of backbench MPs.
A Minister will be required to be in the chamber to answer the debate on behalf of the Government. It's thought that this task will fall to Health Care Services Minister Paul Burstow.
On October 11 last year, Mr Swales tabled the following Early Day Motion (EDM) which will be used as the basis for the debate. The EDM – which has been gathering support since then – has been signed by 99 MPs so far:
That this House notes that despite the fact that the Department of Health now accepts myalgic encephalomyelitis (ME) as a genuine medical condition, diagnosis can still pose a problem because ME symptoms are similar to those present in a number of other medical conditions; recognises that one of the main obstacles to the adequate treatment of ME is the lack of knowledge and consensus about the disease; believes that funding and research must be focused on the bio-medical factors involved and not just simply managing the psychological symptoms; requests that the Government establishes an independent scientific committee to oversee ME research; and calls on the Government and the Medical Research Council to work with ME sufferers and bio-medical researchers in order to achieve a proper understanding of the condition’s challenges and unjust perceptions of the condition.
To follow the progress of the EDM, click here.
Watch the debate live on the BBC Parliamentary Channel by using this link http://news.bbc.co.uk/democracylive/hi/house_of_commons/newsid_9382000/9382412.stm
28 January: The debate has now been listed in next week's House of Common business schedule as a ‘Private Member's debate' to take place in Westminster Hall on Wednesday February 2 between 4 and 4.30pm.
One question I would like to see answered, is on the use of PCR for detecting the retrovirus XMRV, and other MRVs.
Who has mislead the Department of Health, in informing them that PCR is the most sensitive method for detecting this virus?
The published evidence clearly shows that PCR is the least sensitive method for detecting MRVs. Frank Ruscetti, co-discover of the first human retrovirus HTLV, has his name on publish research into this family of retroviruses, and clearly states that:
“In our experience from performing the multiple methods on the same 57 blood samples, the most sensitive blood-based assays for detection of XMRV in decreas- ing order (Table 3) are: (1) perform- ing nested PCR for gag sequences from LNCaP cells that have been co-cultured with subject’s plasma or activated PBMCs, (2) the presence of antibodies to XMRV Env in subject’s plasma, (3) presence of gag products by nested PCR on stimulated PBMCs or detection of viral pro- teins expressed by activated PBMCs with appropriate antisera, (4) nested RT-PCR of plasma nucleic acid or PCR from cDNA from unactivated PBMCs and (5) PCR of DNA from unactivated PBMC prepared from subject’s blood.” (Mikovits et al. Virulence, 2010)
How can researchers who have been unable to detect this retrovirus in any patient, whether prostate cancer or ME, claim to know differently?
Furthermore, Danielson et al. has demonstrated that recovery of wild-type XMRV by PCR using primers, constructed to detect the gag gene sequences of the VP62 clone, is impossible, even in people known to be positive using other PCR primers.
The same researchers who have produced negative papers have done just that. They have not obtained from the WPI, one of the three labs who made the discovery in ME patients back in October 2009, a positive clinical sample with which to test their assays against. There is no proof that their methodologies work at all. And this is the most likely reason for the negative papers.
Does the UK have any interest in science anymore?
Great questions JT.
I hope that the ME Association do their utmost to ensure that MPs are properly briefed in advance, so that they can make the most of this valuable opportunity to debate the issues.
Unfortunately though, I fear that given MPs lack of knowledge about the science and the politics involved, the debate will be at a disappointingly primitive level.
Perhaps the ME Association could prepare and distribute a briefing paper to all MPs prior to 2/2/11, to help them in this regard and hence elevate the quality of the debate.
I would imagine that Biomedical Research will include XMRV etc. but is not exclusive to it – at least I hope not.
It is encouraging news and I cautiously welcome the progress.
Right now the Department of Health has been misinformed that PCR is the most sensitive method, and that methodology is not the reason for the negative studies. This is untrue. With that attitude it is unlikely that MRVs will be a part of Biomedical Research. But it should be, and it should be a priority at this time.
I would hope many areas of biomedical research are taken seriously, like they should have been for years now. Time to move funding for ME outside the MRC, if they are not interested. People’s lives are at stake, not the job of the next CBT/GET practitioner.
I will be highlighting this with my MP who has yet to sign the EDM sponsored by Swale – although he did sign the one advanced in July 2010.
I am realistic though and do not expect a great deal to result from this debate.
Am afraid we are on the merry-go-round – again.
The debate has now been listed in next week’s House of Common business schedule as a ‘Private Member’s debate’ to take place in Westminster Hall on Wednesday February 2 between 4 and 4.30pm.
I do hope this represents a sound beginning.
Hence my expectations previously are I think reasonable.
Half and hour is not long I guess though in the context of there being zilch before then even this is damn fine news.
JT is right of course the complexities will not be considered in full but if the meeting results even in raising the profile of this disease – whatever one choses to call it – then I will be happy.
Just have to get Mum to change channels from Noel Edmunds or whatever!